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! 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 Our Mission Grandview Children s Centre works with children and youth with special needs and their families to achieve their personal best. Our Vision Grandview Children s Centre... leading the way to excellence in services for children and youth with special needs and their families. Introduction 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 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 many comments from parents who write about the impact of having a child with Cerebral Palsy. These heartfelt words were written for you read them and 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 Acknowledgements Wow who knew that getting Opening the Door for Children with Cerebral Palsy off the ground was going to be so much work. It has been such a great experience for Allyson and I to work together. She has brought such a 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! We want to thank Grandview Children s Foundation for their help organizing the photography and layout, and for 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 6 What is Cerebral Palsy? 7 How is Cerebral Palsy Diagnosed? 8 Are there Different Types of Cerebral Palsy? 10 What Causes Cerebral Palsy? 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? 16 What Types of Therapy will my Child Need? 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 4 5
What was it like when your child was first diagnosed with Cerebral Palsy? What is Cerebral Palsy? How is Cerebral Palsy Diagnosed? At first, it was difficult and hard to accept that something was wrong with my son. Once I came to terms with this, all the help and support from the Grandview staff made it an easier road. We always knew from the day our son was born there was a problem. We went to many different doctors that had many different opinions. So when our son was diagnosed, we were relieved that finally there was an answer. What is Cerebral Palsy? When you have Cerebral Palsy, the part of the brain that controls movement doesn t work well. There are many causes, but the underlying problem is that the signal the brain sends to the muscles doesn t work properly. Commonly, there is difficulty with coordination, balance and tight muscles that make it hard to walk. Most children s muscles may feel tight or stiff, which is referred to as spasticity. Some children have only minimal effects and can walk, while others use a walker or wheelchair. Most young children with Cerebral Palsy make progress with their motor skills, but the amount of progress and the amount of time it will take, depends on how severely the child is affected. How is Cerebral Palsy Diagnosed? Parents are usually the first ones to notice their child has difficulty with motor skills. For example, your child may not sit up or walk as quickly as other children. They may do things slightly differently, such as commando crawl (crawl right on their belly) or walk on their toes. It is also common that your doctor or therapist is the first to notice differences in motor function. Signs of Cerebral Palsy are present within the first 24 months of life and it is often suspected as early as 6 months. A firm diagnosis does not usually take place until 1-2 years of age. Your doctor is the one who diagnoses Cerebral Palsy. They listen to your child s medical and developmental history, especially their motor skills, and review all aspects of health and development. A physical examination determines whether there is tightness in the muscles (spasticity) or increased reflexes. Sometimes pictures of your child s brain are necessary to confirm a difference in one of the areas that controls motor function and this is called Magnetic Resonance Imaging (MRI). The decision to proceed with MRI can be discussed with your doctor and depends on your child s symptoms. Putting all this together, along with information about risk factors and results from tests, allows for a diagnosis of Cerebral Palsy to be made. 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? Yes. Cerebral Palsy is often classified based on the body part that is affected and the type of movement problem that is present. Spastic Cerebral Palsy Spastic Cerebral Palsy is the most common type and means the primary problem is tightness in the muscles. It involves primarily the legs (spastic diplegia), one side (spastic hemiplegia), 3 affected limbs (triplegia) or the whole body (spastic quadriplegia). Extra-pyramidal Cerebral Palsy Extra-pyramidal Cerebral Palsy is less common and accounts for about 10% of all children with Cerebral Palsy. Children with extra-pyramidal Cerebral Palsy have extra movements, called dystonia, or have unsteadiness, called ataxia. Some children have a combination of spasticity and extra-pyramidal Cerebral Palsy, which is then called mixed Cerebral Palsy. Sometimes children s symptoms don t fit clearly into one category but the findings on an imaging study, such as MRI, may help clarify the diagnosis. Level of Motor Function (see sidebar) At Grandview, we also classify Cerebral Palsy based on how your child s abilities affect their day-to-day life. This is done using the Gross Motor Function Classification System (GMFCS); a research tool that was developed right here in Ontario. The GMFCS shows us that children with Cerebral Palsy have symptoms that cluster in 5 Levels. Children with Level 1 have mild motor symptoms and are able to walk and run. They have differences in speed, quality of movement and agility. Children with Level 5 have the most severe involvement. They use a wheelchair for mobility and require help with most activities of daily living. LEVEL 1 Walks without restrictions; limitations in more advanced gross motor skills. LEVEL 2 Walks without assistive devices; limitations walking outdoors and in the community. LEVEL 3 Walks with assistive devices; limitations walking outdoors and in the community. 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 All 4 limbs are involved Cerebral Palsy Cerebral = Of the Brain Palsy = Lack of Muscle Control Mixed Mixed Cerebral Palsy may have specific features from both Spastic types and Extrapyrmidal types of Cerebral Palsy Dystonic Twisting movements / posture of limbs and trunks Ataxic Disturbed sense of balance, involuntary movements Athetoid Difficulty controlling and coordinating movement, involuntary movements Research shows that parents are very accurate in determining the level at which their child is functioning. Talk to your team at the Centre about which level your child is at and what expectations to have about your child s future motor skills. Your doctor or therapy team is usually able to begin to assess this between your child s second and third birthday. LEVEL 4 Self-mobility with limitations; children are transported or use power mobility outdoors and in the community. LEVEL 5 Self-mobility is extremely limited even with the use of assistive technology. 8 9
What Causes Cerebral Palsy? How is Cerebral Palsy Diagnosed? What advice would you give to parents whose child has just been diagnosed? Ask, ask, ask questions! Don't be afraid of the diagnosis and take advantage of all information offered. Don't be afraid to ask questions of any medical people. Remember you are in control and you will be the best advocate for your child. Breath and research... look for ways you can assist in your child's progression. Every child is different. Have faith, your child may surprise everyone! 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 developing brain. This injury affects the parts of the brain that control movement: the motor cortex, the cerebellum and the basal ganglia. This can occur before, during or just after birth. One common cause of Cerebral Palsy is prematurity. Infants born at less than 32 weeks gestational age are more prone to bleeding in the areas of the brain that control motor function. Bleeding occurs because the blood vessels are not fully developed. If this happens, premature infants will then develop peri-ventricular leukomalacia (PVL) which affects the brain s motor area. PVL usually leads to a diagnosis of Cerebral Palsy later on. Another common cause of Cerebral Palsy is stroke. Just like adults, children can also have strokes and are particularly vulnerable when in utero. No one knows yet how to detect or prevent this, although research is ongoing. Children who have Cerebral Palsy caused by a cerebral artery stroke should have screening blood work done to make sure they don t have any other risk factors for bleeding and stroke. One common misconception is that Cerebral Palsy is caused by a 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 prevented the difficulties or the development of Cerebral Palsy. Common Causes of Cerebral Palsy Prenatal (Before Birth) Congenital Malformations e.g. Schizencephaly Congenital Infections e.g. Rubella, Cytomegalovirus Prematurity / Low Birth Weight Inflammation of Placenta Twins / Multiple Births Clotting Abnormalities e.g. Factor V Leiden Deficiency Perinatal (During Birth) Placental Abruption Hypoxic-Ischemic Encephalopathy Cord Prolapse Shoulder Dystocia Postnatal (After Birth) Asphyxia Head Injury Brain Infections e.g. Meningitis, Encephalitis 10 11
How does Cerebral Palsy Affect my Child s Learning and Daily Activities? The Term Cerebral Palsy Refers Only to Motor Difficulties The term Cerebral Palsy refers only to motor difficulties. This includes large movements, such as walking and running (gross motor skills), and can include movements of the hands and arms, such as eating and printing (fine motor skills). Learning Disabilities There is also a much higher incidence of learning disabilities and differences, including attention problems, in children with Cerebral Palsy. Sometimes, the injury to the brain affects other areas which control thinking and learning, resulting in an intellectual delay or a learning disability. The team at Grandview can help you understand your child s strengths and challenges and help you plan appropriate goals. The muscles used for speech and language can also be affected. Speech problems can range from slowed speech, to difficulty being understood, to not being able to speak at all. If the speech and language difficulty is severe, your child may be able to use an assistive device such as a Picture Exchange Communication System (PECS) or a specialized computer to help with their communication. Learning can also be affected because the child has difficulty interacting with the environment due to their movement difficulties. For example, they may not be able to experience the thrill of exploring the pots and pans cupboard because they can not get to it and thus lose out on experimenting with some sounds, places and objects. This is just one reason why 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. 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. 12 13
How Healthy are Children who have Cerebral Palsy? How Healthy are Children who have Cerebral Palsy? Most children with Cerebral Palsy are quite healthy. However, there are some medical issues that are more common in children with Cerebral Palsy. Bones and Muscles If a child has difficulty weight bearing, their bone density can be decreased and calcium and vitamin D supplements may be needed. When a child is not able to walk on their own, tight muscles can pull on their joints, particularly the hips. Very tight muscles can cause the hips to slide (sublux) within the socket. Your doctor will monitor your child s hip joints and spine to determine if x-rays are needed. If there are differences on the x-ray, or if your child is having pain in their hips, they will be referred to see a Pediatric Orthopedic Surgeon who run clinics at the Centre. Sometimes other muscles become very tight and surgery can help lengthen these muscles. Feeding, Growth and Nutrition When a child s motor system and movement is severely affected, the muscles that control feeding and swallowing are also affected. Occasionally a child will have a gastrostomy tube (g-tube) inserted to help with feeding. This is a special tube that goes directly into their stomach and provides either all their nutrition or a top-up of calories to help with growth. Your doctor can help you determine if your child is growing adequately and whether they need more calories to keep up with weight gain. Your child may also be more prone to gastro-esophageal reflux (GERD), constipation, drooling and dental cavities. Usually a community pediatrician will help you manage these issues. Seizures Children with Cerebral Palsy have an increased risk of seizures; however, many kids never have seizures. Epilepsy refers to a pattern of repeated seizures. Children with spastic diplegia have a decreased likelihood of seizures compared to children with hemiplegia. Children with spastic quadriplegia have the highest incidence. Children with extra-pyramidal Cerebral Palsy may have unusual movements easily confused with seizures. Some children will need to take medication to help control their seizures and will be followed by a Neurologist. Vision and Hearing Some children with Cerebral Palsy have differences in the muscles that control eye movements. This is called strabismus and can cause one eye to turn in or give a cross-eyed appearance. It is important to treat strabismus as soon as possible because glasses, patching and/or surgery may be helpful to restore the muscle balance and prevent further vision difficulties. A referral to an Ophthalmologist may be required to monitor your child s progress. A list of Optometrists equipped to see children with Cerebral Palsy is also available at the Centre. In Ontario, all children have their hearing screened at birth. However, if your child spent a long time in the Neonatal Intensive Care Unit (NICU), been on multiple medications, has had a lot of difficulties with ear infections, or there are concerns about their hearing, the Centre s Audiologist can retest their hearing. Sleep All small children can have sleep challenges. However, a child with Cerebral Palsy is particularly prone to having them. It is often harder for parents to let their child cry it out as there are so many other challenges facing them on any given day. Sometimes parents worry their child may hurt themselves by crying. All children need a good night s rest and so do their tired parents! So, if your child is not sleeping through the night by 9 months of age, talk to your doctor. What is the best thing about having a child with Cerebral Palsy? She is an amazing child; she makes me laugh everyday. 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 such a happy girl with a smile that melts your heart. We have also learned not to under estimate her abilities. I didn't think she could do certain things only to be pleasantly surprised. It teaches me about people with special needs. I'm more aware that we can overlook the negative and think about what people with disabilities can do. 14 15
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 participation in the community. Children and families may face challenges because of the disability, but this should not stop them from becoming active members of society. Grandview s goal is to help children achieve their personal best through therapy, prevention of secondary problems and participation in school and community life. Physiotherapy Most children with Cerebral Palsy will see a Physiotherapist (PT) to help develop gross motor skills such as 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 physical activities. Physiotherapy will be based on specific goals identified by you, your child and their therapist. Specialized equipment may be suggested, such as a walker or stander. Your child may also benefit from using braces such as ankle-foot orthotics (AFOs). There is an Orthotics Clinic at Grandview where your child can be fitted with orthotics made especially for them. Occupational Therapy (OT) An Occupational Therapist (OT) will assess your child s fine motor skills and determine how their fine motor abilities are impacting their participation in daily activities such as dressing, feeding, bathing, printing and play. Sometimes group therapy will be recommended, other times it will be individual therapy. The OT can also look at your child s environment and make suggestions about equipment needs like bath chairs, home modifications and seating options, such as use of a wheelchair. Speech and Language Therapy Speech-Language Pathologists (SLPs) help children with communication and feeding. They also teach parents ways to help their child develop language, speech and other 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. Cerebral Palsy and Botulinum Toxin A (Botox ) What is Botox? Most children with Cerebral Palsy have stiffness in their muscles referred to as spasticity. When spasticity is severe, sometimes medications can be used to decrease it. Some children may benefit from injections of Botulinum Toxin A (also known as Botox ) to help reduce this tightness in their affected muscles. Botox temporarily paralyses the spastic muscles so there is less pressure on the joints. The spastic muscles will then grow better and the other muscles can be strengthened. The decision to use Botox is made very carefully and is based on the amount of spasticity, the child s medical history, their skills, and input from parent and child. The Centre has a specialized muscle tone clinic where children are seen by a Physiatrist who will help you decide if Botox is right for your child. What is the biggest challenge? 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 communicate has and probably always will be a challenge for me, her mum. 16 17
New Programs & Alternative Therapies Family Support Workers Do Alternative Therapies Work? 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). 18 What s New in Research? There are many exciting areas of research in Cerebral Palsy. Virtual reality games may be a way to improve hand function in children with Cerebral Palsy. Some researchers are looking at how the function of an affected hand improves if the stronger arm is temporarily constrained. There is ongoing research in the dosing and scheduling of Botox injections and scientists are also looking at risk factors for Cerebral Palsy and ways to prevent injury to motor areas of the brain. A lot of research is undertaken at Bloorview Kids Rehab in Toronto and at Sick Kids. From time to time, Grandview becomes involved in research and you may be asked to participate, if interested. Here to Help Family Support Workers will help you adjust to the news that your child has Cerebral Palsy and will provide opportunities for you to talk with other parents who have children with special needs. They will provide information about specialized community supports, resources and available financial sources. They can also provide access to individual and family counseling, educational workshops and support groups. Families who have just learned their child has Cerebral Palsy have a lot of questions, not to mention stressors such as multiple medical appointments. Our family support team is skilled at talking with families, acknowledging their experiences, connecting them with other families and helping them cope with all the new information. Caring for a child with a special need can be very stressful. There are community resources that can help with respite care. Family Support Services can help you find what you need. What barriers exist in society and in the community? How can families overcome this? We face many physical barriers in the community and accessibility is still an issue that needs to be an ongoing fight. Families need to get involved and speak to local government about these issues. 19
What Other Programs do you Offer? Educational, Recreational and Leisure Programs Preschool Programs Children with Cerebral Palsy greatly benefit from Recreation and Leisure Programs The Door s Open Now What? a structured preschool environment to enhance their development. Durham Region has many excellent childcare programs available that provide such care. Information about these programs can be found at www.region.durham.on.ca/childrensservices. The Centre s Preschool Outreach Program (POP) provides consultation to the licensed preschools and daycares in Durham. There is also a daycare for children with special needs available at Resources for Exceptional Children and Youth. A subsidy can be applied for through the Children s Services Division of The Regional Municipality of Durham, although the wait list for this subsidy can be long. Your family support team can help you explore these options. Campbell Children s School 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 One. Short term placements after surgery may also be available. Spaces are limited, so discuss The Centre has fabulous recreation, leisure and summer day camp programs, which are made possible by Grandview Children s Foundation. Activities like swimming lessons, creative dance, yoga, martial arts, sports night and bowling are also offered. Some programs are offered at the main site, and some elsewhere in Durham such as at Legends Sports Centre, Ajax Community Centre, Lakeside Community School and Sinclair High School. The activities are not only fun, but give participants a chance to get physical and show off their abilities. 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 become a positive part of your family s life. this option with your child s therapy team. 20 21
Financial Resources Available for Families of Children with Disabilities Financial Resources Available for Families of Children with Disabilities Here are some of the financial resources available to families of children with disabilities. You will probably need help to navigate the system, so talk to one of our Family Support Workers, 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 qualify, your child may receive a drug and dental card. 905.665.1030 www.cfcs.gov.on.ca Assistive Devices Program (ADP) This covers approximately 75% of the cost of certain equipment (i.e. wheelchair, feeding pump, ankle-foot-orthotics). Your child s therapist or dietitian can help you apply. 416.327.8804 or 1.800.268.6021 www.health.gov.on.ca Diaper Grant Incontinence Supplies Grant 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 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 to the Canada Revenue Agency. 1.800.959.8281 www.ccra-adrc.gc.ca Easter Seal Society - Durham Region This helps with some equipment costs such as wheelchairs, orthotics and ramps. Easter Seals also run summer camps and may provide financial assistance toward local camp programs. Look on the National Programs page for Access 2 Entertainment Card information regarding free admission for support persons. 416.421.8146 or 1.866.6303336 www.easterseals.ca www.easterseals.org Jennifer Ashleigh Children s Charity This provides financial assistance for children with disabilities such as treatment needs and medical expenses. 905.852.1799 www.jenniferashleighfoundation.ca Ontario Federation for Cerebral Palsy (OFCP) This provides some financial support for equipment. OFCP also offers a variety of programs including educational services and individualized planning. 416.244.9868 or 1.877.244.9686 www.ofcp.on.ca Respite Services Helps families with in-home and out-of-home respite needs and can register you for the Community Helpers for Active Participation (CHAP) Program. CHAP helps families find people interested in working with children with disabilities. Special Services at Home (SSAH) funding can be used to pay a CHAP worker. 416.322.6317 www.respiteservices.com Special Services at Home (SSAH) Helps families purchase respite services or allows them to pay a worker to help their child develop skills and participate in activities in the community. 905.665.1030 www.cfcs.gov.on.ca Trillium Drug Plan (TDP) This helps families who spend a large portion of their income on prescription drugs. 416.326.1558 or 1.800.575.5386 www.health.gov.on.ca Access 2 Entertainment Depending on your child s abilities, you may be able to purchase an Access 2 Entertainment Card, which provides discounts for entertainment activates, such as movies and other attractions. www.access2.ca President s Choice Children s Charity This charity is dedicated to helping children who are physically or developmentally challenged, including children with Cerebral Palsy. They are committed to helping remove 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 classmates 905.728.1673 ext 2560. Children with Cerebral Palsy A Parents Guide - Second Edition Edited by Elaine Geralis.Woodbine House 1998. Taking Cerebral Palsy to School Elizabeth Anderson, Valley Park, MO: 2000. JayJo Books, L.C. I m Wendy Blair, Not a Chair! Carolyn MacDiarmid. 2002. Canadian Council on Rehabilitation and Work. Wendy doesn t have Cerebral Palsy, she has a spinal cord injury, but this is such a great book to send to school for the SK to Grade 3 classes to read. Grandview Children s Centre Website www.grandviewcc.ca Cerebral Palsy: What Parents and Doctors Want to Know Peter Rosenbaum. British Medical Journal, Volume 326, pg.970-974, May 3, 2003. CanChild Centre for Childhood Disability Research www.canchild.ca American Academy for Cerebral Palsy and Developmental Medicine www.aacpdm.org Need a family doctor? Try The College of Physicians and Surgeons of Ontario s doctor search. www.cpso.on.ca Ontario Federation for Cerebral Palsy www.ofcp.on.ca Ontario Paralympics Sports Association www.paralympicsontario.ca/ocpsa.shtml Parentbooks.com A bookstore in Toronto that has great resources for families of children with special needs. A Comprehensive Guide to Intellectual & Developmental Disabilities Brown & Percy 2007. Chapter on Cerebral Palsy written by Drs. Hunt & Fehlings. 24 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. 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 to help achieve maximum mobility. 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. 26 27
600 Townline Road South, Oshawa, Ontario L1H 7K6 Tel: 905.728.1673 or 1.800.304.6180 Fax: 905.728.2961 Email: info@grtc.ca www.grandviewcc.ca