Opening the Door for Children with Cerebral Palsy

Disability Awareness Program
Proudly Supported by ...
Opening the Door
for Children with
Cerebral Palsy
www.grandviewcc.ca
This work is dedicated to the children
and youth of Grandview Children’s
Centre who show us the way!
Introduction
About Us
Grandview Children’s Centre offers programs and
services for children with special needs, from infancy
to adolescent age. To find out more about these
programs and services and what our staff may be
able to do to help you and your child, please visit
our website at www.grandviewcc.ca
When families first find out their child has Cerebral
Palsy, they often feel overwhelmed. With information
scattered in books and on the internet, locating
resources to help answer questions can be challenging.
That’s why Grandview Children’s Centre created this
booklet; to open the door to the world of Cerebral Palsy.
Hopefully it answers some of your questions and sparks
more questions for you to ask us. The bolded words can
Our Mission
Grandview Children’s Centre works with children
and youth with special needs and their families to
achieve their personal best.
be found in the glossary at the back of this booklet.
The pictures are of children who attend Grandview
Children’s Centre. They are all learning about
everything they are able to do. The photos say it all these are happy children. Included in the booklet are
Our Vision
many comments from parents who write about the
Grandview Children’s Centre... leading the way to
excellence in services for children and youth with
special needs and their families.
heartfelt words were written for you… read them and
impact of having a child with Cerebral Palsy. These
know that you are not alone. Enjoy reading this booklet
about the wonderful children of Grandview, and how
together, we can help them achieve their personal best.
2
3
These heartfelt
words were
written for you…
read them and
know that you
are not alone.
Table of Contents
6
What is Cerebral Palsy?
7
How is Cerebral Palsy Diagnosed?
8
Are there Different Types of Cerebral Palsy?
be so much work. It has been such a great experience for
10
What Causes Cerebral Palsy?
Allyson and I to work together. She has brought such a
12
How Does Cerebral Palsy Affect my Child’s
Learning and Daily Activities?
14
How Healthy are Children who have Cerebral
Palsy?
16
Can Cerebral Palsy be Treated? How do we
Manage Cerebral Palsy?
We want to thank Grandview Children’s Foundation for
16
What Types of Therapy will my Child Need?
their help organizing the photography and layout, and for
17
Cerebral Palsy and Botulinum Toxin A (Botox®)
18
What’s New in Research?
20
What Other Programs do
you Offer?
21
The Doors Open… Now What?
22
Financial Resources Available for Families of
Children with Disabilities
24
Additional Resources
26
Glossary
Acknowledgements
Wow… who knew that getting ‘Opening the Door for
Children with Cerebral Palsy’ off the ground was going to
thoughtful perspective as she wrote, edited and organized
staff participation for this booklet.
It is wonderful to see such an insightful and talented young
woman make such a great contribution, and for those of
you who are wondering, yes she does have Cerebral Palsy!
their generous financial support in making this booklet
come to life.
Allyson Partridge
Carolyn Hunt
Cerebral Palsy Booklet Project
Developmental Pediatrician
Coordinator
Medical Director,
Grandview Children’s Centre
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5
What is Cerebral Palsy?
What was it like
when your child
was first
diagnosed with
Cerebral Palsy?
How is Cerebral Palsy Diagnosed?
At first, it was difficult
and hard to accept
What is Cerebral Palsy?
How is Cerebral Palsy Diagnosed?
that something was
wrong with my son.
When you have Cerebral Palsy, the part of the brain that controls
Parents are usually the first ones to notice their child has difficulty with motor skills.
Once I came to terms
movement doesn’t work well. There are many causes, but the
For example, your child may not sit up or walk as quickly as other children. They may
with this, all the help
underlying problem is that the signal the brain sends to the
do things slightly differently, such as ‘commando crawl’ (crawl right on their belly) or
and support from the
muscles doesn’t work properly. Commonly, there is difficulty with
walk on their toes. It is also common that your doctor or therapist is the first to notice
Grandview staff made
coordination, balance and tight muscles that make it hard to
differences in motor function. Signs of Cerebral Palsy are present within the first 24
it an easier road.
walk. Most children’s muscles may feel tight or stiff, which is
months of life and it is often suspected as early as 6 months. A firm diagnosis does
referred to as spasticity. Some children have only minimal effects
not usually take place until 1 - 2 years of age.
We always knew from
and can walk, while others use a walker or wheelchair. Most
the day our son was
young children with Cerebral Palsy make progress with their
Your doctor is the one who diagnoses Cerebral Palsy. They listen to your child’s
born there was a
motor skills, but the amount of progress and the amount of time
medical and developmental history, especially their motor skills, and review all
problem. We went to
it will take, depends on how severely the child is affected.
aspects of health and development. A physical examination determines whether there
many different doctors
is tightness in the muscles (spasticity) or increased reflexes. Sometimes pictures of
that had many
your child’s brain are necessary to confirm a difference in one of the areas that
different opinions.
controls motor function and this is called Magnetic Resonance Imaging (MRI). The
So when our son was
decision to proceed with MRI can be discussed with your doctor and depends on your
diagnosed, we were
child’s symptoms. Putting all this together, along with information about risk factors
relieved that finally
and results from tests, allows for a diagnosis of Cerebral Palsy to be made.
there was an answer.
6
7
Are there Different Types of
Cerebral Palsy?
& Determining the Level of Motor Function
Gross Motor
Function
Classification
System Levels
Are there Different Types of Cerebral Palsy?
LEVEL 1
Yes. Cerebral Palsy is often classified based on the body part that is
affected and the type of movement problem that is present.
Walks without
restrictions;
limitations in more
advanced gross
motor skills.
Spastic Cerebral Palsy
Extra-pyramidal Cerebral Palsy
Level of Motor Function (see sidebar)
Spastic Cerebral Palsy is the most common type
Extra-pyramidal Cerebral Palsy is less common and
At Grandview, we also classify Cerebral Palsy based on how
and means the primary problem is tightness in the
accounts for about 10% of all children with
your child’s abilities affect their day-to-day life. This is done
LEVEL 2
muscles. It involves primarily the legs (spastic
Cerebral Palsy. Children with extra-pyramidal
using the Gross Motor Function Classification System
Walks without
assistive devices;
limitations walking
outdoors and in the
community.
diplegia), one side (spastic hemiplegia), 3
Cerebral Palsy have extra movements, called
(GMFCS); a research tool that was developed right here in
affected limbs (triplegia) or the whole body
dystonia, or have unsteadiness, called ataxia.
Ontario. The GMFCS shows us that children with Cerebral
(spastic quadriplegia).
Some children have a combination of spasticity
Palsy have symptoms that cluster in 5 Levels. Children with
and extra-pyramidal Cerebral Palsy, which is then
Level 1 have mild motor symptoms and are able to walk and
called mixed Cerebral Palsy. Sometimes children’s
run. They have differences in speed, quality of movement and
LEVEL 3
symptoms don’t fit clearly into one category but the
agility. Children with Level 5 have the most severe involvement.
findings on an imaging study, such as MRI, may
They use a wheelchair for mobility and require help with most
help clarify the diagnosis.
activities of daily living.
Walks with assistive
devices; limitations
walking outdoors and
in the community.
Research shows that parents are very accurate in determining
LEVEL 4
the level at which their child is functioning. Talk to your team at
Self-mobility with
limitations; children
are transported or
use power mobility
outdoors and in the
community.
Cerebral Palsy
Cerebral = Of the Brain
Palsy = Lack of Muscle Control
Spastic
Hemiplegia
Affects arm and leg on the same side
Diplegia
Primarily affects both legs
(in some there may be limited arm involvement)
Triplegia
3 Limbs involved
Quadriplegia
8
All 4 limbs are involved
Mixed
Mixed Cerebral Palsy may have specific features
from both Spastic types and
Extrapyrmidal types of Cerebral Palsy
the Centre about which level your child is at and what
expectations to have about your child’s future motor skills. Your
Dystonic
Twisting movements / posture of limbs
and trunks
Ataxic
Disturbed sense of balance, involuntary
movements
Athetoid
Difficulty controlling and coordinating movement,
involuntary movements
doctor or therapy team is usually able to begin to assess this
between your child’s second and third birthday.
LEVEL 5
Self-mobility is
extremely limited
even with the use of
assistive technology.
9
What Causes Cerebral Palsy?
How is Cerebral Palsy Diagnosed?
What advice
would you give to
parents whose
child has just
been diagnosed?
What Causes Cerebral Palsy?
There are many different causes of Cerebral Palsy. Sometimes
doctors can pinpoint why a child has Cerebral Palsy, other times it
is very difficult to tell. Cerebral Palsy is caused by injury to the
Ask, ask, ask questions!
developing brain. This injury affects the parts of the brain that
control movement: the motor cortex, the cerebellum and the
Don't be afraid of the
basal ganglia. This can occur before, during or just after birth.
diagnosis and take
advantage of all
One common cause of Cerebral Palsy is prematurity. Infants born
information offered.
at less than 32 weeks gestational age are more prone to bleeding
Don't be afraid to ask
in the areas of the brain that control motor function. Bleeding
questions of any medical
occurs because the blood vessels are not fully developed. If this
people. Remember you
happens, premature infants will then develop peri-ventricular
are in control and you
leukomalacia (PVL) which affects the brain’s motor area. PVL
will be the best advocate
usually leads to a diagnosis of Cerebral Palsy later on.
for your child.
Another common cause of Cerebral Palsy is stroke. Just like adults,
Breath and research...
children can also have strokes and are particularly vulnerable
look for ways you can
when in utero. No one knows yet how to detect or prevent this,
assist in your child's
although research is ongoing. Children who have Cerebral Palsy
progression.
caused by a cerebral artery stroke should have screening blood
work done to make sure they don’t have any other risk factors for
Every child is different.
Prenatal (Before Birth)
Perinatal (During Birth)
Postnatal (After Birth)
• Congenital Malformations
e.g. Schizencephaly
• Placental Abruption
• Asphyxia
• Hypoxic-Ischemic
Encephalopathy
• Head Injury
• Congenital Infections
e.g. Rubella,
Cytomegalovirus
• Prematurity /
Low Birth Weight
• Cord Prolapse
• Brain Infections
e.g. Meningitis,
Encephalitis
• Shoulder Dystocia
bleeding and stroke.
• Inflammation of Placenta
Have faith, your child
may surprise everyone!
Common Causes of Cerebral Palsy
One common misconception is that Cerebral Palsy is caused by a
• Twins / Multiple Births
difficult birth. In fact, only a small fraction of Cerebral Palsy is
related to specific birth events and in almost all of these cases, even
the best pre-natal, obstetric and pediatric care could not have
10
prevented the difficulties or the development of Cerebral Palsy.
• Clotting Abnormalities
e.g. Factor V Leiden
Deficiency
11
How does Cerebral Palsy Affect my
Child’s Learning and Daily Activities?
The Term Cerebral Palsy Refers Only
to Motor Difficulties
Learning Disabilities
There is also a much higher incidence of learning disabilities
The term Cerebral Palsy refers only to motor difficulties.
and differences, including attention problems, in children with
This includes large movements, such as walking and running
Cerebral Palsy. Sometimes, the injury to the brain affects other
(gross motor skills), and can include movements of the hands
areas which control thinking and learning, resulting in an
and arms, such as eating and printing (fine motor skills).
intellectual delay or a learning disability.
The muscles used for speech and language can also be
Learning can also be affected because the child has difficulty
affected. Speech problems can range from slowed speech, to
interacting with the environment due to their movement
difficulty being understood, to not being able to speak at all. If
difficulties. For example, they may not be able to experience
the speech and language difficulty is severe, your child may be
the thrill of exploring the ‘pots and pans’ cupboard because
able to use an assistive device such as a Picture Exchange
they can not get to it and thus lose out on experimenting with
Communication System (PECS) or a specialized computer to
some sounds, places and objects. This is just one reason why
help with their communication.
it is important to provide stimulating learning experiences and
to bring the environment to them as much as possible.
However, most learning issues relate to underlying changes
and differences in the brain.
The team at
Grandview can
help you
understand your
child’s strengths
and challenges and
help you plan
appropriate goals.
12
Sometimes consultation with a Psychologist is recommended to
complete a formal evaluation of your child’s skills. The team at
Grandview can help you understand your child’s strengths and
challenges and help you plan appropriate goals.
13
How Healthy are Children
who have Cerebral Palsy?
What is the best
thing about having
a child with
Cerebral Palsy?
How Healthy are Children who have Cerebral Palsy?
She is an amazing child;
Most children with Cerebral Palsy are quite healthy. However, there are some
medical issues that are more common in children with Cerebral Palsy.
she makes me laugh
everyday.
Bones and Muscles
Vision and Hearing
If a child has difficulty weight bearing, their bone density can be decreased and calcium and vitamin D
Some children with Cerebral Palsy have differences in the
supplements may be needed. When a child is not able to walk on their own, tight muscles can pull on their
muscles that control eye movements. This is called strabismus
joints, particularly the hips. Very tight muscles can cause the hips to slide (sublux) within the socket. Your
and can cause one eye to ‘turn in’ or give a ‘cross-eyed’
doctor will monitor your child’s hip joints and spine to determine if x-rays are needed. If there are differences
appearance. It is important to treat strabismus as soon as
on the x-ray, or if your child is having pain in their hips, they will be referred to see a Pediatric Orthopedic
possible because glasses, patching and/or surgery may be
I think one of the main
things is that it put our
lives into perspective and
we don't sweat the small
things. Our daughter is
and always has been
Surgeon who run clinics at the Centre. Sometimes other muscles become very tight and surgery can help
helpful to restore the muscle balance and prevent further vision
lengthen these muscles.
difficulties. A referral to an Ophthalmologist may be required to
such a happy girl with a
monitor your child’s progress. A list of Optometrists equipped to
smile that melts your
Feeding, Growth and Nutrition
see children with Cerebral Palsy is also available at the Centre.
heart. We have also
When a child’s motor system and movement is severely affected, the muscles that control feeding and
In Ontario, all children have their hearing screened at birth.
swallowing are also affected. Occasionally a child will have a gastrostomy tube (g-tube) inserted to help
However, if your child spent a long time in the Neonatal Intensive
with feeding. This is a special tube that goes directly into their stomach and provides either all their nutrition
Care Unit (NICU), been on multiple medications, has had a lot
or a ‘top-up’ of calories to help with growth. Your doctor can help you determine if your child is growing
of difficulties with ear infections, or there are concerns about their
do certain things only to
hearing, the Centre’s Audiologist can retest their hearing.
be pleasantly surprised.
Sleep
It teaches me about
All small children can have sleep challenges. However, a child
people with special
with Cerebral Palsy is particularly prone to having them. It is often
needs. I'm more aware
Children with Cerebral Palsy have an increased risk of seizures; however, many kids never have seizures.
harder for parents to let their child ‘cry it out’ as there are so
that we can overlook the
Epilepsy refers to a pattern of repeated seizures. Children with spastic diplegia have a decreased likelihood
many other challenges facing them on any given day. Sometimes
of seizures compared to children with hemiplegia. Children with spastic quadriplegia have the highest
negative and think about
parents worry their child may hurt themselves by crying. All
incidence. Children with extra-pyramidal Cerebral Palsy may have unusual movements easily confused with
what people with
children need a good night’s rest and so do their tired parents!
seizures. Some children will need to take medication to help control their seizures and will be followed by
disabilities can do.
So, if your child is not sleeping through the night by 9 months of
a Neurologist.
age, talk to your doctor.
adequately and whether they need more calories to keep up with weight gain. Your child may also be more
learned not to under
estimate her abilities.
I didn't think she could
prone to gastro-esophageal reflux (GERD), constipation, drooling and dental cavities. Usually a
community pediatrician will help you manage these issues.
Seizures
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Can Cerebral Palsy be Treated?
How do we Manage Cerebral Palsy?
Can Cerebral Palsy be Treated?
How do we Manage Cerebral Palsy?
There is no ‘cure’ for Cerebral Palsy. The focus of treatment is on promoting health, wellness and
Speech and Language Therapy
participation in the community. Children and families may face challenges because of the disability,
Speech-Language Pathologists (SLPs) help children with
but this should not stop them from becoming active members of society. Grandview’s goal is to help
communication and feeding. They also teach parents ways to
children achieve their personal best through therapy, prevention of secondary problems and
help their child develop language, speech and other
participation in school and community life.
communication
skills.
Sometimes
other
methods
of
communication will be introduced such as signing, pictures or
electronic
devices.
Alternative
and
Augmentative
Communication (AAC) is used when communication is very
difficult for a child.
Physiotherapy
Most children with Cerebral Palsy will see a Physiotherapist (PT) to help develop gross motor skills such as
Cerebral Palsy and Botulinum
Toxin A (Botox®)
What is the
biggest
challenge?
rolling, crawling, standing and walking. Physiotherapists use a variety of methods to help with this including
an active ‘hands on’ approach, and home programs consisting of stretches, exercises and participation in
What is Botox®?
physical activities. Physiotherapy will be based on specific goals identified by you, your child and their
Most children with Cerebral Palsy have stiffness in their muscles
therapist. Specialized equipment may be suggested, such as a walker or stander. Your child may also benefit
referred to as spasticity. When spasticity is severe, sometimes
from using braces such as ankle-foot orthotics (AFOs). There is an Orthotics Clinic at Grandview where
medications can be used to decrease it. Some children may
your child can be fitted with orthotics made especially for them.
benefit from injections of Botulinum Toxin A (also known as
Botox®) to help reduce this tightness in their affected muscles.
Occupational Therapy (OT)
Botox® temporarily paralyses the spastic muscles so there is less
An Occupational Therapist (OT) will assess your child’s fine motor skills and determine how their fine motor
pressure on the joints. The spastic muscles will then grow better
abilities are impacting their participation in daily activities such as dressing, feeding, bathing, printing and
and the other muscles can be strengthened. The decision to use
®
The biggest challenge is
and continues to be
advocating for our
daughter's needs in all
areas of her life. Having
to have faith and trust in
so many people dealing
with your child who is
unable to verbally
play. Sometimes group therapy will be recommended, other times it will be individual therapy. The OT can
Botox is made very carefully and is based on the amount of
also look at your child’s environment and make suggestions about equipment needs like bath chairs, home
spasticity, the child’s medical history, their skills, and input from
communicate has and
modifications and seating options, such as use of a wheelchair.
parent and child. The Centre has a specialized muscle tone clinic
probably always will be
16
where children are seen by a Physiatrist who will help you decide
a challenge for me,
if Botox® is right for your child.
her mum.
17
New Programs
& Alternative Therapies
What’s New in Research?
Family Support Workers
Here to Help
There are many exciting areas of research in
Family Support Workers will help you adjust to the news
Cerebral Palsy. Virtual reality games may be a
that your child has Cerebral Palsy and will provide
way to improve hand function in children with
opportunities for you to talk with other parents who have
Cerebral Palsy. Some researchers are looking
children with special needs. They will provide information
at how the function of an affected hand
about specialized community supports, resources and
improves if the stronger arm is temporarily
available financial sources. They can also provide access
What barriers
exist in society
and in the
community?
How can families
overcome this?
constrained. There is ongoing research in the
to individual and family counseling, educational
dosing and scheduling of Botox® injections
workshops and support groups. Families who have just
We face many physical
and scientists are also looking at risk factors for
learned their child has Cerebral Palsy have a lot of
barriers in the community
Cerebral Palsy and ways to prevent injury to
questions, not to mention stressors such as multiple
and accessibility is still
motor areas of the brain. A lot of research is
medical appointments. Our family support team is skilled
an issue that needs to be
undertaken at Bloorview Kids Rehab in Toronto
at talking with families, acknowledging their experiences,
an ongoing fight.
and at Sick Kids. From time to time, Grandview
connecting them with other families and helping them
Families need to get
becomes involved in research and you may be
cope with all the new information.
involved and speak to
asked to participate, if interested.
Caring for a child with a special need can
be very stressful. There are community
local government about
these issues.
resources that can help with respite
Do Alternative Therapies Work?
care. Family Support Services can
help you find what you need.
Many families use alternative and complementary therapies with their
children. We understand you may want to try anything to improve your
child’s health and abilities. However, it is important to carefully look at the
medical evidence for any alternative therapy. We strongly encourage you to
discuss your questions with us first, as some therapies may interfere with
other treatments, such as seizure medication. There are some
complementary therapies that have been shown to be helpful such as
therapeutic horseback riding and hydrotherapy (therapeutic swim time).
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19
What Other Programs do you Offer?
Educational, Recreational and Leisure Programs
Preschool Programs
Recreation and
Leisure Programs
The Door’s Open…
Now What?
Children with Cerebral Palsy greatly benefit from
a structured preschool environment to enhance
The Centre has fabulous recreation, leisure
their development. Durham Region has many
and summer day camp programs, which
excellent childcare programs available that
are made possible by Grandview Children’s
provide such care. Information about these
Foundation.
programs
at
lessons, creative dance, yoga, martial arts,
www.region.durham.on.ca/childrensservices.
sports night and bowling are also offered.
The Centre’s Preschool Outreach Program
Some programs are offered at the main
can
be
found
Activities
like
swimming
(POP) provides consultation to the licensed
site, and some elsewhere in Durham such
preschools and daycares in Durham. There is
as at Legends Sports Centre, Ajax
also a daycare for children with special needs
Community Centre, Lakeside Community
available at Resources for Exceptional Children
School and Sinclair High School. The
and Youth. A subsidy can be applied for through
activities are not only fun, but give
the Children’s Services Division of The Regional
Municipality of Durham, although the wait list for
Campbell Children’s School
participants a chance to get physical and
show off their abilities.
this subsidy can be long. Your family support
team can help you explore these options.
Campbell Children’s School is a small,
specialized school located at the Centre. It is
designed for children with physical disabilities
and/or severe speech needs who require active
therapy. All potential students must be able to
participate in the daily school program, group
activities and therapy sessions. Spots are
available for JK, SK and occasionally Grade
Programs encourage social interaction with
peers and provide the opportunity to
explore without parents. Programs are
changing all the time so keep an eye out for
the ones that are right for your child. The
most recent Rec Guide is always available
at Grandview and on our website at
www.grandviewcc.ca
It can often be an overwhelming and
stressful time when your child is
diagnosed with Cerebral Palsy. As
your child grows and develops, new
questions are certain to arise. We
encourage you to ask your team at
the Centre a lot of questions. We
have listed additional resources at
the back of this booklet - visit our
Resource Centre for more
information. In our experience,
despite the initial sadness that many
parents feel after a diagnosis of
Cerebral Palsy is made, most go on
to find parenting a child with
Cerebral Palsy a very rewarding
experience. The children who come
to the Centre are wonderful
blossoming individuals who will
achieve AMAZING things! We
welcome you to the Grandview
family and are confident that we will
One. Short term placements after surgery may
become a positive part of your
also be available. Spaces are limited, so discuss
family’s life.
this option with your child’s therapy team.
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21
Financial Resources Available for
Families of Children with Disabilities
Financial Resources Available for
Families of Children with Disabilities
Jennifer Ashleigh Children’s Charity
Special Services at Home (SSAH)
Here are some of the financial resources available to families of children with disabilities.
This provides financial assistance for children
Helps families purchase respite services or
You will probably need help to navigate ‘the system’, so talk to one of our Family Support Workers,
with disabilities such as treatment needs and
allows them to pay a worker to help their child
they will be happy to help.
Assistance for Children with
Severe Disabilities (ACSD)
Assists with expenses related to your child’s
disability and is based on income. If you
Disability Tax Credit (DTC)
Reduces the amount of tax you have to pay if
you qualify. A Disability Tax Credit Certificate
T2201, signed by your doctor, needs to be sent
qualify, your child may receive a drug and
to the Canada Revenue Agency.
dental card.
1.800.959.8281 www.ccra-adrc.gc.ca
905.665.1030 www.cfcs.gov.on.ca
Easter Seal Society - Durham Region
Assistive Devices Program (ADP)
This covers approximately 75% of the cost of
This helps with some equipment costs such as
wheelchairs, orthotics and ramps. Easter Seals
certain equipment (i.e. wheelchair, feeding
also run summer camps and may provide
pump, ankle-foot-orthotics). Your child’s
financial assistance toward local camp
therapist or dietitian can help you apply.
programs. Look on the National Programs
416.327.8804 or 1.800.268.6021
page for Access 2 Entertainment Card
www.health.gov.on.ca
information regarding free admission for
support persons.
Diaper Grant
416.421.8146 or 1.866.6303336
Incontinence Supplies Grant
www.easterseals.ca www.easterseals.org
Available from Easter Seal Society for children
over age 3 that use diapers. Your doctor must
sign the application.
1.888.377.5437 www.easterseals.org
medical expenses.
develop skills and participate in activities in the
905.852.1799
community.
www.jenniferashleighfoundation.ca
905.665.1030 www.cfcs.gov.on.ca
Ontario Federation for
Trillium Drug Plan (TDP)
Cerebral Palsy (OFCP)
This helps families who spend a large portion
This provides some financial support for
of their income on prescription drugs.
equipment. OFCP also offers a variety of
416.326.1558 or 1.800.575.5386
programs including educational services and
www.health.gov.on.ca
individualized planning.
416.244.9868 or 1.877.244.9686
www.ofcp.on.ca
Access 2 Entertainment
Depending on your child’s abilities, you may
be able to purchase an Access 2 Entertainment
Respite Services
Card,
Helps families with in-home and out-of-home
entertainment activates, such as movies and
respite needs and can register you for the
other attractions. www.access2.ca
which
provides
discounts
for
Community Helpers for Active Participation
(CHAP) Program. CHAP helps families find
President’s Choice Children’s Charity
people interested in working with children with
This charity is dedicated to helping children
disabilities. Special Services at Home (SSAH)
who
funding can be used to pay a CHAP worker.
challenged, including children with Cerebral
416.322.6317 www.respiteservices.com
Palsy. They are committed to helping remove
are
physically
or
developmentally
barriers to independence and may help fund
mobility
equipment
and
environmental
modifications.
www.presidentschoice.ca/Childrenscharity
22
23
Additional Resources
Additional Resources
Please visit our Resource Centre for more information!
Grandview Children’s Centre Disability
Awareness Program
Other resources for school age children and their
Taking Cerebral Palsy to School
Elizabeth Anderson, Valley Park, MO: 2000.
American Academy for Cerebral Palsy and
Developmental Medicine
JayJo Books, L.C.
www.aacpdm.org
I’m Wendy Blair, Not a Chair!
Need a family doctor?
Carolyn MacDiarmid. 2002. Canadian
Try The College of Physicians and Surgeons of
Council on Rehabilitation and Work.
Ontario’s doctor search. www.cpso.on.ca
classmates 905.728.1673 ext 2560.
Children with Cerebral Palsy
A Parents’ Guide - Second Edition
Edited by Elaine Geralis.Woodbine House 1998.
Wendy doesn’t have Cerebral Palsy, she has a
spinal cord injury, but this is such a great book
Ontario Federation for Cerebral Palsy
to send to school for the SK to Grade 3 classes
www.ofcp.on.ca
to read.
Ontario Paralympics Sports Association
Grandview Children’s Centre Website
www.paralympicsontario.ca/ocpsa.shtml
www.grandviewcc.ca
Parentbooks.com
Cerebral Palsy: What Parents and
A bookstore in Toronto that has great resources
Doctors Want to Know
for families of children with special needs.
Peter Rosenbaum. British Medical Journal,
Volume 326, pg.970-974, May 3, 2003.
A Comprehensive Guide to Intellectual &
Developmental Disabilities
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CanChild Centre for Childhood
Brown & Percy 2007.
Disability Research
Chapter on Cerebral Palsy written by
www.canchild.ca
Drs. Hunt & Fehlings.
25
Glossary
Alternative Therapy
Therapy that is outside the scope of traditional
medical practice.
Ankle-Foot-Orthotic (AFO)
A plastic brace that is molded to the shape of
your child’s foot. It helps maintain a stretch on
tight muscles and a normal foot position.
Ataxia
A disorder of movement that results in
instability while walking.
Audiologist
A professional who assesses hearing.
Basal Ganglia
Specialized structures in the brain that help
control movement.
Botulinum Toxin A (Botox®)
Medication used to treat muscle tightness. It is
derived from a toxin produced by a bacteria that
causes temporary muscle weakness.
Cerebellum
A structure at the back of the brain that is often
considered to be the “control centre”
for movement.
Cerebral Artery Stroke
A blockage or bleed of one of the main blood
vessels of the brain.
Commando Crawl
When a child moves on their stomach by
pulling along with their arms, without much
movement in the legs. (i.e. an army
commando crawling under a wire.)
Complementary Therapy
Used in conjunction with traditional medical
therapy. It may include such things as
therapeutic horseback riding or sensory
integration therapy.
26
Constipation
A child is not having regular, soft bowel
movements. Frequency of normal bowel
movements can vary from child to child but
most typically developing children will have
at least one bowel movement per day.
Developmental Pediatrician
A Pediatrician who has completed specialized
training in child development. They will collect
detailed information and do a physical
examination to make a diagnosis. Sometimes
they will complete additional tests to assess
specific aspects of development.
Diplegia
When primarily the legs are affected.
Dystonia
Muscles that have variability in tone. Children
usually have some uncontrolled movements.
Epilepsy
A condition where an individual has seizures
regularly.
Extra-Pyramidal Cerebral Palsy
Cerebral Palsy that is predominately a
movement disorder as opposed to spasticity.
Family Support Worker
A social work professional with a broad range
of skills who can help you and your family cope
with the challenges of having a child with a
disability and provide links to financial and
community programs.
Fine Motor Skills
Movements of the hand and arm, such as
eating, dressing and printing.
Gastro-Esophageal Reflux Disease (GERD)
Liquid and/or food that is in the stomach and
moves back up to into the esophagus. Many
young children experience this, but when a
child has Cerebral Palsy and their muscles
don’t function normally, the reflux can be
severe. Some symptoms include pain,
irritability and vomiting.
Gross Motor Function Classification
System (GMFCS)
Describes the severity of Cerebral Palsy.
Gross Motor Skills
Large movements such as rolling, sitting,
crawling, standing and walking.
Gastrostomy Tube (G-Tube)
A tube inserted by a surgeon or radiologist into
the stomach by making a small incision in the
skin and stomach lining. It is used for children
who are unable to manage pureed food or
who are having trouble taking in enough
calories to maintain their weight.
Hemiplegia
When one side of the body is affected.
Magnetic Resonance Imaging (MRI)
A large magnetic tube machine. The child goes
inside the tube and the magnetic forces in their
brain are measured and turned into a picture.
Motor Cortex
The area in the brain that controls basic motor
function.
Occupational Therapist (OT)
A professional trained to help achieve maximum
functional independence and often focuses on
hand function and equipment needs.
Periventricular Leukomalacia (PVL)
Injury to the white matter surrounding the
ventricles (spaces) in the brain.
Picture Exchange Communication
System (PECS)
A series of cards, which can be used in place of
spoken language, to request items and activities.
Physiotherapist (PT)
A professional trained
maximum mobility.
to
help
achieve
Prematurity
Infants who are born before 37 weeks gestational
age.
Psychologist
A professional trained in assessing thinking
or cognitive skills.
Quadriplegia
When both arms and both legs are affected.
Seizure
An electrical discharge in the brain that causes the
nerve cells to fire too quickly resulting in a loss of
consciousness and shaking of the arms and legs.
Sometimes seizures are subtle and will result in
loss of control of only certain muscles, staring
spells or changes in heart rate.
Spasticity
‘Tightness’ in the muscles.
Speech-Language Pathologist (SLP)
A professional trained to assist in verbal or
non-verbal (pictures, computers, signs) speech
production and language skills.
Strabismus
A visual disorder where the eyes are misaligned
and point in different directions.
Sublux
Gradual movement of the head of the femur bone
(top of the leg) within the hip socket. When a child has
very tight muscles and is not weight bearing, this
movement can change the forces at work on the hip,
causing the hip to gradually move out.
27
600 Townline Road South, Oshawa, Ontario L1H 7K6
Tel: 905.728.1673 or 1.800.304.6180
Fax: 905.728.2961
Email: [email protected]
www.grandviewcc.ca