A Guide To

Cerebral
Palsy

Published by:
The Ontario Federation for Cerebral Palsy
This edition of A Guide to Cerebral Palsy has adapted material
from several excellent publications which outline the causes and
effects of cerebral palsy:

A Guide to Cerebral Palsy

by Dr. A. Mervyn Fox
Canadian Cerebral Palsy Association, 1991

Cerebral Palsy - Facts and Figures

United Cerebral Palsy, 1993

Cerebral Palsy - Information kits for educators and parents

Cerebral Palsy Association of Manitoba, 1989

Children with Cerebral Palsy - A Parents’ Guide

Elaine Geralis, 1998

The author would like to thank the following for their expertise and
editorial assistance:

Laurie Fisher, B.C.

Ginny Worsley-Mohrbutter
Heather Rasmussen, Saskatchewan
Laura Schnellert, Manitoba

Third edition, published 1999 by:

Cerebral Palsy Association of B.C.

Cerebral Palsy Association in Alberta
Saskatchewan Cerebral Palsy Association
Cerebral Palsy Association of Manitoba
Ontario Federation for Cerebral Palsy

Written and designed by Nan Colledge

This edition revised, 2011

By The Ontario Federation for Cerebral Palsy
Contents

Introduction 1

What is Cerebral Palsy? 2

How Many People have CP? 3

What Causes Cerebral Palsy? 4

The Human Brain 6

Diagnosis of CP 6

Types of CP 7

Treatment and Management of CP 9

Living with CP 13

Aging and CP 15

Preventing CP 16

A Parent’s Perspective 17

Research 18

The Professional Team 19

Bibliography 21

Cerebral Palsy Associations 23

Introduction
Every person
personwho
whohas
hascerebral
cerebralpalsy is unique.
palsy People
is unique. with CP
People withare
CPa
are a diverse
diverse group group with a variety
with a veriety of symptoms
of symptoms and Ifneeds.
and needs. If new
you are you
are new to palsy,
to cerebral cerebral
youpalsy, youyourself
may find may find yourself with
struggling struggling with a
a bewildering
bewildering numberand
number of medical of medical
technicaland technical terms.
terms.
In
In Canada,
Canada, people
people with
with disabilities have access
disabilities have access toto a
a rich
rich range
range of of
support and therapy services, equipment, medical
support and therapy services, equipment, medical intervention, intervention,
educational
educational and and employment
employment opportunities
opportunities.inHaving CP Having
the world. should CP be
no barrier to leading an enjoyable and productive life. However
should be no barrier to leading an enjoyable and productive life.
having a disability does present some additional challenges. Being
Howeve
well having
informed a disability
about does and
the options present some additional
opportunities challenges.
available is a first
Being well informed about the
step in overcoming these challenges. options and opportunities available is
a first step in overcoming these challenges.
This booklet is designed to be a general introduction for anyone
This booklet
interested is designed
in cerebral palsy,to such
be aas:
general introduction for anyone
interested in cerebral palsy, such as:
• parents whose child has recently been diagnosed as
• parents whose child has recently been diagnosed as having
having
CP, or who CP, or who
may havemay CP have CP
• peoplewith
• people withCPCP wanting
wanting basic
basicinformation,
information,or or
wishing
wishing to
to provide
provide information
information to friends
to friends and assistants
and assistants
• education, social
• education, service
social and
service health
and professionals
health professionals
• friends, relatives and colleagues of people with CP
• friends, relatives and colleagues of people with CP
The Ontario Federation for Cerebral Palsy will be pleased to supply
further
The information
Ontario on areas
Federation of particular
for Cerebral interest
Palsy to you.
will be A listtoofsupply
pleased books
for moreinformation
further detailed reading is also
on areas of suggested on pageto21you. A list of
particular interest
books for more detailed reading is also suggested on page 21
To Use
To Use this
this Booklet
Booklet Effectively
Effectively
Because CP effects everyone uniquely, highlight sections that are
Because CPtoeffects
appropriate you oreveryone uniquely,
your child highlightthis
when passing sections that
booklet are
along
appropriate to you or your child when passing this booklet
to interested people. They can focus on important points when along
to interested people. They can focus on important points when
highlighted.
highlighted.
To make
To make this
this text
texteasier
easiertotoread:
read:
• The abbreviation “CP” is used throughout
• The abbreviation “CP” is used throughout
• CP affects roughly equal numbers of men and women. Rather
• CP affects
than use theroughly
clumsyequal numbers
“he/she”, “he”of and
men “she”
and women.
are used in
Rather than
alternating use the clumsy “he/she”, “he” and “she”
sections
are used in alternating sections

1
What
What is
is Cerebral
Cerebral Palsy?
Palsy?
Cerebral
Cerebral palsy
palsy(CP)
(CP)is is
a term used
a term to describe
used a neurological
to describe a neurological
condition
condition affecting
affectingbody
bodymovement
movementand andmuscle
muscleco-ordination.
co-ordination.CP
CP
is
is considered
consideredaanon-progressive
non-progressivebut butnot
notunchanging
unchanging condition of of
condition
movement
movement and/or
and/or posture,
posture, due
due to
to an
an injury
injury to
to the
the developing
developing brain.
brain.

Development
Development of of the
thebrain
brainstarts
startsininearly
earlypregnancy
pregnancyand andcontinues
continues
until
until about age three. Injury
Injury to
tothe
thebrain
brainduring
duringthis
thistime
timemay
mayresult
result
in
in
CP.CP.
AsAs a result
a result of an
of an injury
injury to the
to the brain,
brain, CP CP interferes
interferes withwith mes-
messages
sages
from thefrom theto
brain brain to the and
the body, body, andthe
from from thetobody
body to the brain.
the brain.

Cerebral
Cerebral == “of
“of the
the brain”
brain”

Palsy
Palsy == “lack
“lack of
of muscle
muscle control”
control”

The
The effects
effectsofofCP
CPvary
varyfrom
fromindividual
individualtotoindividual. Some
individual. Some people
people
appear
appear to have nono obvious
obviouseffects
effectswhile
whileothers
othersmay
maybebe non-speak-
non-speaking
ing or may
or may useuse mobility
mobility devices
devices andand personal
personal attendants
attendants to assist
to assist them
them with living.
with daily daily living.

Depending
Depending on on which
whichareas
areasofofthe
thebrain
brainhave
havebeen
beeninjured,
injured,one
oneoror
more
more of
of the
the following
following may
may occur:
occur:

• •muscle
muscletightness
tightnessororspasm
spasm
• •involuntary
involuntarymovement
movement
• difficulty with gross motor skills such as walking or running
• difficulty with gross motor skills such as walking or running
• difficulty with fine motor skills such as writing and speaking
• difficulty with fine motor skills such as writing and speaking
• abnormal perception and sensation
• abnormal perception and sensation

2
These effects
effects maymay cause
causeassociated
associatedmedical
medical problems
problems such
such as
as difficulty
difficulty eating,
eating, poor bladder
poor bladder and bowelandcontrol,
bowelbreathing
control, problems,
breathing
problems,
and pressure andsores.
pressure
All ofsores.
these All of thesecan
difficulties difficulties can be well
be well managed for
managed for
people with CP. people with CP.
The
The injury
injury toto the
the brain
brain that
that caused
caused CPCP may
may also
also cause
cause aa number
number of
of
other
other conditions,
conditions, such
such as:
as:
• •seizures
seizures
• •learning
learningdisabilities
disabilities
• hearing impairment
• hearing impairment
• vision problems
• vision problems
It is important to remember that limbs affected by CP are not
paralyzed
It is important and can feel pain, that
to remember heat,limbs
cold affected
and pressure.by CPItare is also
not
important to
paralyzed andremember
can feel that,
pain,just because
heat, cold andsomeone
pressure. withItCP may
is also
not be able
important totoremember
speak, it does not mean
that, just becausehe has nothing
someone to say.
with The
CP may
degree
not be ableof physical
to speak,impairment
it does not experienced
mean he has by anothing
persontowith say.CP
The is
degree of physical
not an indication ofimpairment
his level of experienced
intelligence. by a person with CP is
not an indication of his level of intelligence.
People with CP have a normal life-expectancy. The injury to the
brain is awith
People one-time event
CP have a so the condition
normal will not get
life-expectancy. The worse although
injury to the
brain is a one-time
the effects of CP mayevent. The condition
change over time.willSome
not getmay worse, although
improve: for
the effects of CP may change over time. Some
example, a child may be able to gain enough hand control to write may improve: for
example,
and to dress a child may be
himself. able tomay
Others gaingetenough
worse: hand
tightcontrol
musclesto write
can
and to dress himself. Others may get worse:
cause problems in the hips and spines of growing children which tight muscles can
cause
requireproblems
orthopaedicin the hips and
surgery; the spines of growing
aging process canchildren
be harderwhichon
require orthopaedic surgery; the aging process can be harder on
bodies with abnormal posture or which have had
bodies with abnormal posture or which have had little exercise. little exercise.

Cerebral Palsy
Cerebral Palsyis:is:
NOT contagious
NOT contagious
NOT hereditary
NOT hereditary
NOT life-threatening
NOT life-threatening

How Many People have Cerebral Palsy?

It is difficult to estimate exactly how many people have CP. Many
people with mild CP are never diagnosed, while others may have
multiple disabilities which overshadow their CP.
It is estimated that one out of every 500 babies, and up to one in
three premature babies is affected to some extent. There are over
60,000
50,000 Canadians with CP.

3
What Causes Cerebral Palsy?
Any injury
injury totothe
thedeveloping
developingbrain,
brain, caused
caused by by genetic
genetic disorders,
disorders,
developmental disorders, injury or disease may produce CP.

During pregnancy:
During pregnancy:
Anything which tends to produce a low birth weight baby will
Anything which tends to produce a low birth weight baby will
increase the likelihood of CP. Factors during pregnancy which may
increase the likelihood of CP. Factors during pregnancy which may
cause CP include:
cause CP include:

• multiple births (twins or triplets)

• multiple births (twins or triplets)
• a damaged placenta which may interfere with fetal growth
• a damaged placenta which may interfere with fetal growth
• Infections
• Infections
• poor nutrition
• exposure to toxic substance, including nicotine and alcohol
• poor nutrition
• maternal diabetes,
• exposure hyperthyroidism
to toxic substance, or high
including bloodand
nicotine pressure
alcohol
• biochemical genetic disorders
• maternal diabetes, hyperthyroidism or high blood pressure
• chance malformations of the developing brain
• biochemical genetic disorders
• chance malformations of the developing brain
During labour:
During labour:
• premature delivery
• abnormal
• prematurepositioning
delivery of the baby (such as breech or transverse
lie (which makes
• abnormal delivery
positioning difficult)
of the baby (such as breech or
• rupture of thelieamniotic
transverse membranes
(which makes leading
delivery to fetal infection
difficult)
• rupture of the amniotic membranes leading to fetal infection

4
In Early Childhood:
CP can occur if a young child suffers brain damage due to:
• infection such as meningitis
• brain haemorrhages
• head injury following falls, car accidents or abuse
• a lack of oxygen (asphyxia) due to accidents such as drowning
• seizures
Not many years ago, CP was usually described as being caused by
“a lack of oxygen at birth”. Researchers have come to realize that
the causes are far more complex. In many cases, a difficult labour
may be a symptom rather than a cause of CP. Many people with CP
are born prematurely. Other families experience a straight-forward
pregnancy and delivery then discover later on that their child has
CP.
As a person with CP you may ask, ‘why did this happen to me?’.
As a parent of a child with CP you may ask, ‘did I do anything
wrong?’.
In some instances, these questions will never be answered to your
satisfaction. But, as one mother said, “When I stopped saying ‘why
me?’ I was ready to accept my son’s CP and look to the future.”

The future for people with

CP is very bright. CP will
not prevent a child from
having fun and playing with
friends.
5
The Human Brain

Motor Cortex Touch, limb position

movement

Judgement,
personality Vision

Cerebellum
co-ordinator
Basal Ganglia,
gross motor function

Diagnosis of CP
CAT scans (Computerized Axial Tomography) and MRI (Magnetic
Resonance Imaging) can identify lesions in the brain. This
technology enables some children, who are at risk of having CP,
to be diagnosed very early. For the majority of people with CP it is
months and sometimes years before a diagnosis is confirmed.

A child with CP will probably be delayed in reaching her “milestones”

such as rolling over, sitting and standing. A baby may feel unusually
stiff or floppy. A diagnosis of CP is unlikely to be given until the child’s
progress is observed over a period of time and other conditions are
ruled out. Many parents report that this waiting period, when they
do not yet know why their child is not developing at the same speed
as her peers, is particularly stressful.

6
Types of CP
With so many different causes of CP, it is no surprise that it takes
many forms. Every person with CP is a unique individual, but is
likely to be classified by their doctor as having a particular type
of CP. Classification can be according to the type of movement
disorder and/or by the number of limbs affected.

Classification by Number of Limbs Involved

Hemiplegia Diplegia Quadriplegia

One side of the All four limbs are All four limbs
body is affected. affected. Both are involved.
The arm is legs are more
usually more affected than the
involved than the arms.
leg

Monoplegia Triplegia
Only one limb is Three limbs are
affected, usually an involved, usually
arm. both arms and a leg.

7
Classification by Movement Disorder
The location of the brain injury will determine how movement is
affected.
affected.
Spastic cerebral
Spastic cerebral palsy
palsy
Spastic CP
Spastic CP isis the
the most
most common
common typetype and
and isis caused
caused by by injury
injury toto
the motor cortex. Spastic muscles are tight and stiff,
the motor cortex. Spastic muscles are tight and stiff, which limit which limit
movement. Usually
movement. Usually muscles
muscles work
work in in pairs:
pairs: when
when one one group
group
contracts, the other group relaxes to allow free movement
contracts, the other group relaxes to allow free movement in the in the
desired direction. Spastic muscles become active
desired direction. Spastic muscles become active together and together and
block effective
block effective movement.
movement. ThisThis muscular
muscular “tug-of-war”
“tug-of-war” is is called
called
co-contraction. Spasticity may be very mild and
co-contraction. Spasticity may be very mild and affect only aaffect only a few
few
movements, or it can affect the whole body. The amount
movements, or it can affect the whole body. The amount of spasticity of spasticity
usually changes
usually changes over over time.
time.

Choreo-Athetoid cerebral palsy

Choreo-Athetoid cerebral palsy
Choreo-Athetoid CP results from injury to the basal ganglia or
Choreo-Athetoid
cerebellum and leadsCP results from in
to difficulty injury to the and
controlling basal ganglia or
co-ordinating
cerebellum and leads to difficulty in controlling
movement. Children may have involuntary movements (which and co-ordinating
movement. Children
frequently cease whilemay have involuntary
they sleep), movements
or have difficulty (which
with skills that
frequently
require coordinated movements such as speech or reaching that
cease while they sleep), or have difficulty with skills and
require
graspingcoordinated movements
objects smoothly. Some such
termsas speech used
commonly or reaching and
to describe
grasping objects smoothly. Some
these involuntary movements include: terms commonly used to describe
these involuntary movements include:
Athetosis - slow, writhing movements, particularly in the hands and
Athetosis - slow, writhing movements, particularly in the hands and
face
face
Ataxia -- unsteady
Ataxia unsteady walking
walking and
and balance
balance problems.
problems. Ataxia
Ataxia results
results
from damage to the cerebellum, the brain’s major centre of balance.
from damage to the cerebellum, the brain’s major centre of balance.
Chorea - jerky movements of the head, arms, or legs
Dystonia
Dystonia -- twisting
twisting movements
movements and and postures
postures ofof the
the trunk
trunk or
or limbs
limbs

Mixed-type cerebral
Mixed-type cerebral palsy
palsy
When areas
When areas of
of the
the brain
brain that
that control
control both
both muscle
muscle tone
tone and
and voluntary
voluntary
movement are affected, a diagnosis of “Mixed - Type
movement are affected, a diagnosis of “Mixed - Type CP” may CP” may bebe
given. Usually the spasticity is more obvious at first, with involuntary
given. Usually the spasticity is more obvious at first, with involuntary
movement increasing as the child develops.
The classifications of movement disorder and number of limbs
involved are usually combined (e.g. spastic diplegia). These
technical words can be useful in describing the type and extent of
CP, but they are only labels. A label does not describe an individual.

8
Managment and Supports
CP is not considered a curable condition and the word “management”
is used more often than “treatment”. However, there is much that
can be done to lessen the effects of CP and to help people with CP
to lead independent lives. This is a brief overview of some of the
“The Professional
available options. “The Professional Team”
Team” section
section (page
(page19)
19) gives
further information.
If you have a child with CP it is easy to be overwhelmed by the
number of professionals involved with your child and the different
management and therapy options. Not all interventions are
appropriate for each individual and, as a parent, you are the person
to decide what is right for you and your child. Some parents like to
involve their child in every option that may be helpful; others decide
that having family time is more important than spending hours each
week on therapy or the stress involved in going through another
bout of surgery. Some adults with CP consider the therapy and/
or surgery they had as children very helpful; others quit therapy in
adolescence and stay as far away from doctors and therapists as
they can.

Therapy
Therapy
Physical
Physical Therapy
Therapy (PT)
(PT) aims
aims to
to help
help people
people achieve
achieve their
their potential
potential
for physical independence and mobility. PT includes exercises,
correct positioning, and teaching alternate ways of movement such
as walkers, bracing or handling a wheelchair.
Occupational Therapy (OT) designs purposeful activities to
increase independence through fine motor skills. OTs help children
to use adaptive equipment such as feeding, seating and bathroom
aids.
Speech Language Therapy aims at improving communication. A
child may only need help to overcome a slight articulation problem,
or she may not be able to communicate verbally and may require
a non-verbal communication system. Alternative communication
systems include eye-gaze systems, blissymbol boards, and
electronic voice
electronic voice synthesizers.
synthesizers.
Music Therapy uses music for the treatment of neurological mental
or behavioural disorders.
Orthotics, Casts and Splints
Most children with CP will be prescribed orthotics, casts or splints to
supplement their therapy programs. These should be custom made
for your
for your child
child and
and help
help to
to provide
provide stability,
stability, keep
keep joints
joints in
in position,
position,
and help stretch muscles.
and help stretch muscles.
9
Medications
Your child
Your child may
may take
take medication
medication for
for conditions
conditions associated
associated with
with her
her
CP, such
CP, such asas seizures.
seizures. Drugs
Drugs may
may sometimes
sometimes be be prescribed
prescribed for
for
severe spasticity
severe spasticity or
or painful
painful spasms.
spasms. Spasticity
Spasticity can
can be
be temporarily
temporarily
reduced by
reduced by nerve
nerve blocking
blocking injections.
injections. AA recent
recent development
development isis the
the
injection of
injection of botulinum
botulinum toxin
toxin (“Botox”)
(“Botox”) into
into a
a spastic
spastic muscle
muscle group.
group.
This can
This can reduce
reduce tone
tone for
for several
several months.
months.

Surgery
Orthopaedic and soft-tissue surgery can help to counter the effects
of spasticity on the spine, hips and legs. Surgery can lengthen or
transfer tendons, enabling the child to move more easily. When the
child has finished growing, bone surgery may help reposition and
stabilize bones.
Neurosurgery
Neurosurgery involves
involves surgery
surgery on
on the
the nerve
nerve roots
roots which
which control
control
muscle
muscle tone. Selective posterior rhizotomy aims to reduce spasticity
tone. Selective posterior rhizotomy aims to reduce spasticity
by
by severing
severing some
some of
of the
the nerve
nerve roots
roots in
in the
the spine.
spine.

Educational Supports
Educational Supports
Many children with CP will also have some type of learning disability.
Many children with CP will also have some type of learning disability.
Assessment by a psychologist, and the support of special educators
Assessment by a psychologist, and the support of special educators
can reduce the effects of a learning disability.
can reduce the effects of a learning disability.
Canada has some of the world’s best “early intervention” programs.
Canada has some of the world’s best “early intervention” programs.
Children with CP will often start their education early to help improve
Children with CP will often start their education early to help improve
their mobility and communication skills before starting school.
their mobility and communication skills before starting school.
Most children with CP will receive an integrated education enabling
Most children with CP will receive an integrated education enabling
them to mix with their peers in their neighborhood school. A child
them to mix with their peers in their neighborhood school. A child
with mild CP may simply require minor program adjustments. For
with mild CP may simply require minor program adjustments. For
example, he may need a little more time to write an exam if his hand
example, he may need a little more time to write an exam if his hand
control is poor. Other children with CP may require considerable
control is poor. Other children with CP may require considerable
support from resource staff and teaching assistants.
support from resource staff and teaching assistants.
Children should have an Individualized Education Plan (I.E.P.)
Children should have an Individualized Education Plan (I.E.P.)
which assesses the child’s performance, sets goals and specifies
which assesses the child’s performance, sets goals and specifies
which supports are required. The amount of support offered, and
which supports are required. The amount of support offered, and
the commitment to successful integration, varies widely between
the commitment to successful integration, varies widely between
school boards and individual schools. A good partnership between
school boards and individual schools. A good partnership between
parents and educators will help children to achieve their goals.
parents and educators will help children to achieve their goals.

10
Adaptive Equipment
An enormous
An enormousrange
rangeof of aids
aids andand adaptive
adaptive equipment
equipment are now
are now
available for people with disabilities. As the number of elderlyelderly
available for people with disabilities. As the number of
people in
people in Canada
Canada increases,
increases, more
more daily
daily living
living aids
aids are
are coming
coming onto
the market.
onto the market.
Mobility Devices:
Mobility Devices:
wheelchairs (manual, power and sports)
wheelchairs
scooters (manual, power and sports)
scooters
specially made bicycles and tricycles
specially made
walkers and bicycles and tricycles
crutches
walkers and crutches
Communication Devices:
symbol boards Devices:
Communication
voice synthesizers
symbol boards
head sticks and keyguards
voice synthesizers
for computers
head sticks and keyguards for computers
There are a
wide variety of
communication
devices available for
people with CP

Daily Living Aids:

electronic door openers
large-handled eating utensils
grab sticks
environmental control systems

Some equipment is available through provincial health and

social service systems. These vary across the country. Your
local Cerebral Palsy Association can advise you what is
available in your area.

11
Independent Living
The effects of CP are lessened considerably by an environment
which enables people with disabilities to play a full part in their
communities. It is never too early to start working toward future
independence. Barriers against people with disabilities - both
physical and attitudinal have fallen due to the efforts of social
policy-makers. There is still much to do, but Canada can take pride
in being one of the world’s most progressive countries on disability
issues.

“The ultimate long-term goal is realistic independence. To get

there we have to have some short-term goals, those being
a working communication system, education to his potential,
computer skills and, above all, friends.”
- Parent of a boy with CP

People with CP
can work in any
field or business
they are
interested in.

A special skills
dog can help
a person with
CP to feel more
independent.
Many people
with CP find
that having a
special skills
dog also makes
them more
approachable.

12
Living with CP
More than ever before people with CP have access to full participation
and inclusion in their community. People with CP can go to school
and university, live independently, work, raise a family and have an
active social life. CP is not a life threatening condition and, in itself,
is no barrier to leading a long and productive life.
The barriers that individuals with CP may face are often created
by others. For instance someone with CP may wish to enter a
building that has no wheelchair entrance - the barrier in this case is
the building itself NOT the fact that the person uses a wheelchair.
People with CP will often site discriminatory attitudes and barriers
as a greater challenge than any physical or cognitive disability they
may have. Public education and policy initiatives have helped to
develop more inclusive attitudes amongst the general population.
People with CP are valued members of Canadian society.

Management and Treatment

Therapy, surgery and the use of adaptive equipment help many
people with CP to use their minds and bodies to their full potential.

Access
It is difficult to lead an independent life if public buildings, washrooms
and transportation are not accessible. To have a good career you
need educational opportunities. To have a satisfying social life you
need access to recreational facilities and opportunities to develop
friendships. It is important that people with CP continue to advocate
for change and inclusion in these areas.

Accessible
vehicles have
enabled people
with CP to travel
and experience
new things.

13
Attitudes
It is very hurtful to have someone pat you on the head if you
are sitting in a wheelchair, or to walk away because they cannot
understand what you are trying to say. Prejudice and teasing can
be very damaging. A good sense of self-esteem is required to cope
with these negative attitudes. Children who are over-protected
may also be prevented from becoming independent. People with
disabilities are people first and should never be described by such
negative labels as “wheelchair-bound”, “spastic”, or “afflicted with
cerebral palsy”. All people share similar needs, desires, drives and
responsibilities.

A group outing
with friends can
help to foster
a sense of
community and
belonging for
people with CP.

Being able to
express yourself
is important to
everyone. This
group of friends
put on an art
show to share
their experiences
with others.

14
Aging and CP
Most treatment and research programs concern children with CP
and research on aging with a disability is still in preliminary stages.
CP affects individuals in different ways and it is hard to generalize
about the effects of aging. Although people with CP are considered
to have a normal life expectancy, the physical challenges of CP
may intensify with age (such as increased spasticity, fatigue, loss of
strength and declining mobility), and these physical challenges can
in turn lead to increased stress and anxiety.
Research indicates that adults with CP tend to lose some of
the mobility they gained as children. This may be due to weight
gain, lack of therapy and exercise, and the development of other
conditions such as arthritis.
It can be frustrating for adults to deal with a health care system that
appears to have little knowledge or interest regarding the changing
needs of aging with a disability. A positive attitude makes a big
difference, and developing relaxation techniques and coping skills
can have a beneficial effect on mental and physical health.

Maintaining Physical
Maintaining Physical & Mental
& Mental Health
Health
A lifestyle that involves regular exercise and proper nutrition is
important to everyone, including those with disabilities. Exercise
may just seem like one more thing to fit into a schedule already
overwhelmed by the additional demands of therapy and medical
appointments. But a good general fitness level will help with range
motion and
of motion andflexibility.
flexibility,Exercise
and exercise to improve
to improve cardiovascular
cardiovascular fitness
fitness
can can improve
improve endurance
endurance andoffset
and help help offset age-related
age-related changes
changes that
that lead
lead to fatigue.
to fatigue. A nutritious,
A nutritious, high-fibre,
high-fibre, low-fatlow-fat diethelp
diet will willavoid
help
avoid problems
problems with constipation
with constipation and weight
and weight gain andgain
willand will increase
increase energy
energy levels.
levels.
Having CP does not make you immune to other conditions. People
with CP are as likely as anyone else to contract heart disease,
cancer or diabetes. Sometimes a change in the body can be put
down to an effect of CP when it is actually a different condition.
The importance of learning skills to increase independence and
self-confidence throughout an individual’s lifetime cannot be over-
emphasized. The stresses associated with aging will be lessened
if a person is able to maintain a positive personal attitude, if he
is involved in meaningful activities, and if he has developed a
supportive environment. He needs confidence to seek information,
to plan for age-related changes, and to be an active participant in
his health care and lifestyle choices.
15
Preventing CP
Some measures of prevention are possible today. Pregnant
women are tested for the Rh factor and, if Rh negative, they can
be immunized within 72 hours of giving birth. This prevents any
adverse consequences of blood incompatibility in a subsequent
pregnancy. Newborns with jaundice can be treated effectively with
phototherapy. Other preventive programs are directed towards
preventing premature delivery, reducing exposure to infections,
X-rays, drugs and medications. Diabetes and anemia can be kept
under control during pregnancy.
Education programs
Education programs stress
stress the
the importance
importance of
of optimal
optimal well-being
well-being
prior to conception and adequate prenatal care. Safety campaigns
prior to conception and adequate prenatal care. Safety campaigns
give advice
give advice on
on protecting
protecting children
children from
from accidents
accidents and
and injuries.
injuries.
These measures
These measures have
have undoubtedly
undoubtedly prevented
prevented many
many children
children from
from
developing CP. Other developments - such as neonatal
developing CP. Other developments - such as neonatal intensive intensive
care -- have
care have enabled
enabled very
very low
low birth
birth weight
weight babies
babies to
to survive.
survive. These
These
babies are at high risk of developing
babies are at high risk of developing CP. CP.

Research
Research
Research programs across North America are looking for ways to
Research programs across North America are looking for ways to
prevent CP,
prevent CP, to
to reduce
reduce its
its effects,
effects, and
andtotoimprove
improvethe
thequality
qualityofoflife
life
for people
for people with
with CP.
CP. Research
Research questions
questions being
being addressed
addressed include:
include:

•• What
What are
are the
the factors
factors that
that predispose
predispose thethe developing
developing brain
brain toto
injury? Can these factors be eliminated?
injury? Can these factors be eliminated?
•• Can
Can CPCP be
be diagnosed
diagnosed before
before birth
birth and
and better
better diagnosed
diagnosed
shortly after birth?
shortly after birth?
•• Could
Could brain
brain cells
cells be
be re-grown
re-grown toto repair
repair the
the injury
injury which
which
results in
results in CP?
CP?
•• Which
Which treatments
treatments areare most
most effective
effective for
for specific
specific disabilities
disabilities of
people with CP?
of people with CP?
•• What
What are
are the
the effects
effects of
of aging
aging on
on people
people with
with CP?
CP?
•• Based on new developments in surgical
Based on new developments in surgical techniques,techniques,
computer technology,
computer technology, andand bioengineering
bioengineering sciences,
sciences, what
what
improvements can be made in the quality of life of people
with CP?
•• What are the social and emotional effects on a child growing
up with CP? How can she be helped to develop a positive
self-image?

16
A Parent’s Perspective

by Cal Lambeth

My daughter was born nine weeks prematurely after my two

week stay in the hospital with ruptured membranes. She had to be
resuscitated in the delivery room. She had no breathing difficulties
and was soon transferred out of the intensive care nursery. Five weeks
later, still a month ahead of schedule, we took her home.

I remember that time as a difficult one of adjustment. She was our

first baby. Things hadn’t gone according to”script”. I felt both she and
I had been cheated out of those important nine weeks in the womb.
These negative feelings were those of many new mothers and they did
not relate to any anxiety about her long-term health. Rather naive,
I had considered that her birth circumstances were either “do “ or
“die”. She would be born and survive with no further problems, or she
would die (probably from breathing difficulties). I was unaware of the
increased risk of many disabling conditions which prematurity creates.

Over time I began to notice “things” about her. She was irritable and
colicky. She couldn’t seem to master breast feeding as her tongue
kept thrusting out. Her head control was very poor. She kept arching
her back to look over her head. For a time we all found this amusing,
thinking that the ceiling fascinated her. Her right hand remained
almost always clenched. Her legs seemed stiff and her feet scissored.
Gradually, private little fears began to creep in, but I held them off as
merely relating to her prematurity.

Because of her premature birth she became involved in a study of lung

maturity. This necessitated follow-up with certain health professionals
over the course of the year after her birth. It was as a result of this
study that we received a diagnosis. When she was about 11 months
old a pediatrician at one of these meetings merely said “You’re
aware that she has cerebral palsy.” She was described as “mild to
moderate”. I was absolutely devastated. I remember clutching her and
sobbing, “My poor baby!”. It was like a scene from a bad movie and
I still remember it vividly. Later, doctors apologized for this rather
blunt and unprepared announcement. It seemed that they had been
concerned about her condition for some time but were monitoring it
and didn’t want to say anything until they were sure of the diagnosis.
Although I appreciated this goodwill, I questioned the withholding
of this information. They couldn’t shield me forever, and in my
opinion, my daughter was losing valuable time in which to begin
physiotherapy.

17
Thus began our lives as “Parents of a Special Needs Child”. Those
were bleak days. I was despondent, panic stricken, and felt that life
would never be good again. My career plans were destroyed. Looking
back at this time I realize how bitter and hostile I was. I found it
difficult to maintain close relationships with people who had children
of a similar age as my daughter. I wanted to scream when they
complained that their child was “into everything” while mine lay flat
on the floor, unable to sit or crawl. I also felt angry when people told
me how marvelously I was coping. I felt neither marvelous, nor that I
was coping well. Furthermore, it seemed that this was an indication
of their view that my child was a burden. Privately, I felt this way
myself at times. I suppose this all represented a fairly typical and
predictable process.

Although I presented a bold front to those around me, the truth of

the matter was that I was depressed and frightened. I was fortunate
to have a family which offered physical help and a listening ear. Not
everyone is so lucky. Furthermore, I strongly felt the need to talk to
others about their own experiences. My first thought was to look up
“Cerebral Palsy” in the telephone directory. I took a deep breath and
called the number of the Cerebral Palsy Association, determined to be
strong and in control. Shortly into the conversation I broke down, but
the woman I spoke to was kind. She offered the information that her
husband had CP and that they were expecting their first child. These
words gave me a new sense of what the future could hold. CP was
not a death sentence. My child could grow up, be happy, lead a life
of purpose. At least the possibility was there. From this conversation
I received information about parent support groups which I attended
for a time and found valuable. But the most important fact was that
I had taken some action. This small step had helped to allay the sense
of “aloneness” and had given me a renewed sense of control.

Our family is now much like any other - enjoying the excitement of
new achievements and the ups and downs of child rearing. But it
would be wrong to claim that all of the emotional and psychological
hurdles have been overcome. As our child matures, new challenges
present themselves. We are always seeking new ways to adapt her
physical environment to allow greater independence. We want to
encourage self-esteem, and pleasure in new achievements. We are not
experts in these matters, but have learned to rely upon our common
sense and the knowledge and expertise of those we trust.

18
The Professional Team
Most hospitals, treatment centres and community programs use a
team approach to therapy. The professionals in the team are highly
trained in specific aspects of CP, but you know your child best. If
you have a child with CP, he may benefit from a consultation with
some of the following specialists.
Audiologist: Identifies and measures hearing losses and the health
of the organs of hearing. Audiologists can fit and manage hearing
aids, and perform listening tests on children who have difficulty
paying attention.
Dentist: The spasticity and feeding difficulties of CP can lead to
dental problems. Children with CP should see a dentist before or
during their fourth year. Try to see a dentist who is familiar with CP.
Ear, Nose & Throat (ENT) Surgeon: Can diagnose and treat
problems in hearing, feeding, swallowing and drooling. ENT
surgeons may be consulted about problems with severe or repeated
ear infections, enlarged tonsils or adenoids.
Early Childhood Educator (ECE): Translates recommendations
from your child’s therapists into practical, enjoyable play experiences.
The ECE enables children with CP to attend regular daycare or pre-
school programs.
Kinesiologist: Helps to improve movement quality and uses
specialized athletic and recreational programs to provide good
experience of the body in motion
Neonatologist: A paediatrician who specializes in the care of
newborn infants
Neurologist: Specializes in the diagnosis and treatments of
problems of the nervous system
Neurosurgeon: Performs operations on the spinal cord and brain
Nutritionist or Dietician: Specializes in feeding and nutritional
needs. Children who have difficulty feeding may need special
nutritional supplements. The Nutritionist may also recommend a diet
to prevent constipation in children with weak abdominal muscles.
Occupational Therapist (OT): Designs purposeful activities to
help your child develop fine motor skills and become independent.
OTs may recommend and provide training in adaptive equipment
such as bathroom aids, seating and mobility systems and adapted
toys. They can advise on wheelchair accessibility issues at home
or school.
19
Ophthalmologist: A physician specializing in disorders of the eyes
and vision.
Optometrist: Examines, measures and treats visual defects by
means of glasses or contact lenses.
Orthopaedic Surgeon: Specializes in disease and abnormalities
of the locomotor system (bones, muscles, joints and tendons).
In addition to performing surgery, the orthopaedic surgeon can
recommend special footwear or braces.
Orthotist: Designs braces and shoe supports
Paediatrician: Specializes in the health, development and diseases
of children. Paediatric Neurologists have expertise in the diagnosis
and treatment of brain disorders, including epilepsy. Developmental
Paediatricians are experts in the diagnosis and management of
developmental and behavioural disorders.
Physiatrist: A doctor specializing in physical medicine and
habilitation.
Physical Therapist (PT): Helps with mobility and physical
independence. PTs focus on gross motor functions, strategies to
reduce spasticity, help children move correctly, and teach alternative
ways of movement such as walkers or wheelchair mobility.
Podiatrist: Diagnoses and treats disorders of the foot.
Psychiatrist: A doctor who treats mental, emotional and behavioural
disorders.
Psychologist: Provides assessment, consultation and interventions
for learning, behaviour, socializing or emotional adjustment
difficulties.
Rehabilitation Engineer and Technologist: Brings knowledge of
modern technology to the design, construction and maintenance
of adaptive devices including wheelchairs, augmentative
communication devices, and environmental control aids.
Social Worker: Provides supportive counselling and referral
services to assist families to cope with the additional challenges of
raising a child with a disability.
Speech-Language Pathologist: Helps children to develop their
verbal communication. Can recommend and provide training in the
use of augmentative communication equipment, and can assist
with chewing and swallowing difficulties.
Urologist: A specialist in diseases of the urinary tract.

20
Bibliography
Your provincial Cerebral Palsy Association has a resource library of
books and videos you may find helpful. The following are frequently
recommended:

For Parents
Children with Cerebral Palsy - A Parent’s Guide
Elaine Geralis & Tom Ritter
Woodbine House, 5616 Fishers Lane, Rockville MD 20852
An informative book about CP for parents of young children. Chapters
alternate between factual information and parents’ experiences.

Caring for Children with Cerebral Palsy - A Team Approach

John P. Dormans & Louis Pellegrino
Paul H. Brookes Publishing Co., P.O. Box 10624, Baltimore, Maryland
21285-0624
This interdisciplinary text is the definitive reference for team-based care of
children with CP.

For Children
Can’t You Be Still/ Nobody Knows/ Here’s What I Mean to Say
Sarah Yates
Gemma B Publishing Inc, Box 740, 776 Corydon Ave, Winnipeg, MB R3M 0Y1
Three books about Ann, who finds out that having CP causes her all sort
of difficulties. She resolves her problems by utilizing her real strengths.

For Adolescents
Taking Charge - Teenagers Talk about Life and Physical Disabilities
Kriegsman, Zaslow & D’Zumura-Richsteiner
Woodbine House, 5615 Fishers Lane, Rockville MD 20852
Written for teenagers with CP, spina bifida, and muscular dystrophy. It
delivers a positive message to help them work through difficulties,
recognize their abilities, and reach for their dreams.

Sex for Young People with Spina Bifida or Cerebral Palsy

Association for Spina Bifida & Hydrocephalus
Tavistock House North, Tavistock Square, London WC1H 9HJ, England.
An outline for young people and their parents, of sex and sexual
relationships, with clear drawings. Contraception and parenthood are
discussed.

21
For Adults
Aging with a Disability
R. Trieschmann
Demos Publication, 156 Fifth Avenue, New York, NY 10010
Examines the aging disabled population with information from people with
disabilities.
Enabling Romance
Kroll & Klein
A frank and insightful guide to love, sex and relationships for people with
disabilities. Individuals and couples with a wide range of disabilities share
their insights and experiences.

For Educators
Changing Canadian Schools: Perspectives on Disability and
Inclusion
Gordon Porter and Diane Richler
Roeher Institute, Kinsmen Building, York University, 4700 Keele Street,
North York, ON M3J 1P3
An exploration of legal and policy issues, the roles of parents and advocacy
organizations, and innovative inclusive practices.
Putting the Puzzle Together - a handbook of ideas for including
all kids in regular classrooms
Cerebral Palsy Association of B.C., 1996

Videos
Cerebral Palsy - A Video Guide for Families (17 minutes)
The Cerebral Palsy Association of B.C. produced this award-winning video
which provides an orientation to CP for parents, health care professionals,
support staff and volunteers.
Never Say NEVER(11 minutes)
Cerebral Palsy Association in Alberta
This short video aims to raise awareness about CP and the Alberta
Association. Hosted by Joe Coughlin, a former CBC anchor who has CP.
Cerebral Palsy - A Lifelong Journey (88 minutes)
Ontario Federation for Cerebral Palsy
Four-part video: Understanding CP; Infancy & Early Childhood; The
Adolescent & Young Adult; The Middle Years and Beyond.
My Left Foot (103 minutes)
The Oscar-winning movie of Irish author Christy Brown’s struggles and
triumphs growing up with CP.
22
Web Sites
Web sites change quickly and this information will date! The following
may be good starting points to link you to further information and
other organizations.
www.cerebralpalsycanada.com
www.cerebralpalsycanada.com
A web
A web site
site with
with information
information about
about Cerebral
Cerebral Palsy
Palsy Associations
Associations
across Canada
across Canada
www.ofcp.ca
www.ofcp.ca
Web site
Web site of
of the
the Ontario
Ontario Federation
Federation for
for Cerebral
Cerebral Palsy
Palsy
www.ucp.org
www.ucp.org
National homepage
National homepage of of United
United Cerebral
Cerebral Palsy,
Palsy, the
the leading
leading source
source of
of
information and advocacy for people with CP in the United
information and advocacy for people with CP in the United States.States.
www.ninds.nih.gov
www.ninds.nih.gov
Research information from the National Institute of Neurological
Research information
Disorders and Stroke offrom the National Institute of Neurological
Maryland.
Disorders and Stroke of Maryland.
www.scope.org.uk
www.scope.org.uk
Scope, formerly The Spastic Society, is the largest charity working
Scope, formerly
with people with The SpasticinSociety,
disabilities the U.K.is the largest charity working
with people with disabilities in the U.K.
www.aacpdm.org
www.aacpdm.org
The American Academy for Cerebral Palsy and Developmental
The American Academy for Cerebral Palsy and Developmental
Medicine.
Medicine.
Cerebral Palsy
Cerebral Palsy Associations
Associations
Cerebral Palsy
Cerebral Palsy Associations
Associations areare independent,
independent, non-profit
non-profit
organizations directed by volunteers in each Canadian province.
organizations directed by volunteers in each Canadian province.
The associations
The associations offer
offer aa wide
wide range
range ofof support
support and
and information
information
services. These may include:
services. These may include:

••Information
Information through
through newsletter
newsletter and
and library
library services
services
••Public
Public education
education
•• Advocacy in areas such as education, accessability and
human rights
••Equipment
Equipment loans
loans
••Support
Support groups
groups
••Recreational
Recreational programs
programs
••Funding
Funding for
for equipment,
equipment, education
education and
and research
research
23
British
British Columbia
Columbia Prince
Nova ScotiaEdward Island
CerebralPalsy
Cerebral PalsyAssociation
Association of British
British Halifax
PrinceRegional
Edward Cerebral Palsy Palsy
Island Cerebral
Columbia
Columbia Association
Association
801-409Granville
801-409 GranvilleStreet
Street P.O.
P.O.Box
Box33075
22034
Vancouver, BC, V6C
Vancouver, BC, V6C 1T2 1T2 Quinpool Postal Outlet
Charlottetown, PE, C1A 9J2
Tel: (604) 408-9484
Tel: (604) 408-9484 Halifax, NS, B3L 4T6
Tel:(902)892-9694
Tollfree:
Toll free:1-800-663-0004
1-800-663-0004 Tel: 902-479-0963
Fax:(902)628-8751
Fax: (604) 408-9489
Fax: (604) 408-9489 Fax: 902-479-0963
E-mail: [email protected]
E-mail: [email protected] E-mail
Ontario is: [email protected]
Alberta Ontario Federation for Cerebral Palsy
Alberta Prince Edward Island
1630 Lawrence Avenue W. Suite 104
Cerebral
CerebralPalsy
PalsyAssociation in Alberta
Association in Alberta Prince
12001 44St SE Toronto, ON, Island
Edward M6L 1C5Cerebral Palsy
3688 48 Avenue NE Association
Toll free: 1-877-244-9686
Calgary,
Calgary,AB,AB,T2Z
T3J4G9
5C8 P.O.
Tel:(403)543-1161 Fax:Box 22034
(416)244-6543
Tel:(403)543-1161 Charlottetown,
www.ofcp.ca PE, C1A 9J2
Toll
Tollfree:1-800-363-2807
free:1-800-363-2807 Tel:(902)892-9694
Fax:(403)5431168
Fax:(403)5431168 Fax:(902)628-8751
E-mail: Manitoba
E-mail:[email protected]
[email protected] Cerebral Palsy Association of
Saskatchewan Ontario
Manitoba
Saskatchewan
Saskatchewan Cerebral Palsy Ontario
105-500 Federation
Portage for Cerebral Palsy
Ave.
Saskatchewan Cerebral Palsy
Association 1630 Lawrence Avenue
Winnipeg, MB, R3C 3X1 W. Suite 104
Association
2310 Louise Avenue Toronto, ON, M6L
Tel:(204)982-4842 1C5
2310 Louise
Saskatoon, Avenue
SK. S7J 2C7 Toll
Tollfree: 1-877-244-9686
free:1-800-416-6166
Saskatoon, SK.
Tel:(306)955-7272 S7J 2C7 Fax: 416-244-6543
Fax:(204)982-4844
Tel:(306)955-7272
Toll free:1-800-925-4524 www.ofcp.ca
E-mail: [email protected]
Toll free:1-800-925-4524
Fax:(306)373-2665
Fax:(306)373-2665
E-mail: [email protected] Manitoba
E-mail: [email protected] Quebec
Cerebral Palsy Association of
New Brunswick Association de Paralysie Cerebrale
Manitoba
Cerebral Palsy Foundation
New Brunswick du Quebec
Box 26074
(St.John)
CerebralInc.
Palsy Foundation 600 Woodward
Winnipeg, MB, R3G 3R5
P.(St.John)
O. Box 2152
Inc. C.P. 1781
Tel:(204)982-4842
St.P.John, NB.
O. Box E2L 3V1
2152 Sherbrooke,
Toll QC, J1H 5N8
free:1-800-416-6166
Tel:(506)648-0322
St. John, NB. E2L 3V1 Tel:(819)829-1144
Fax:(204)982-4844
E-mail: [email protected]
Tel:(506)648-0322 Toll free:1-800-311-3770
E-mail: [email protected]
E-mail: [email protected] E-mail: m.larochelle@paralysie.
Newfoundland cerebrale.com
Cerebral Palsy Association of Quebec
Newfoundland
Newfoundland Association de Paralysie Cerebrale
Cerebral
P.O. Palsy Association of
Box 23059 du Quebec
Newfoundland
Churchill Square Postal Outlet 155 St. Jean Baptiste Blvd.
St.P.O. Box NF.
Johns, 23059
A1B 4J9 Chateayguay, QC, J6K 3B1
Tel:(709)753-9922Postal Outlet
Churchill Square Tel:(450)699-3770
St. Johns,
E-mail: NF. A1B 4J9
[email protected] Toll free:1-800-311-3770
Tel:(709)753-9922
E-mail: [email protected]

24
Contact Us
Phone: 416.244.9686
Fax: 416.244.6543
Toll-Free: 1.877.244.9686
TTY: 416.246.9122
Toll-Free TTY: 1.866.740.9501

Email: [email protected]
Website: www.ofcp.ca

Address: 1630 Lawrence Avenue West, Suite 104

Toronto, Ontario, M6L 1C5
Canada

© Copyright 2011 by
Ontario Federation for Cerebral Palsy