Spastic QuadriplegiaUseful web links

Chapter 1

• Cerebral Palsy Alliance (2014) What Is Cerebral Palsy?  
• Cerebral Palsy Foundation (2016) What Is Cerebral Palsy?  
• Ontario Brain Institute (2017) Meet Jessica. This Is What She Wants You to Know about Cerebral Palsy.  
• CP Now (2015) The Cerebral Palsy Toolkit: From Diagnosis to Understanding.  
• UK National Institute for Health and Care Excellence (2017) Cerebral Palsy in Under 25s: Assessment and Management.  
• Gillette Children’s (2022) Cerebral Palsy Road Map: What to Expect as Your Child Grows. (The road map covers all types of CP and all GMFCS levels. It is organized into four age groups from birth to age 18. It covers 10 areas of interest including mobility, musculoskeletal, and interventions.) 
• Emily Perl Kingsley (1987) A Parent’s Perspective: "Welcome to Holland."  
• CP-NET (2015) Creating Possibilities for Cerebral Palsy.  
• CanChild Centre (2024) The ICF for Parents (P-ICF). (Scroll down the page for a very useful video series on the ICF.) 
• Cerebral Palsy Foundation (2016) The F Words of Disability.  
• CP-NET (2018) My Favourite Words.  
• CP-NET (2015) These Six F-Words Won’t Fill up Your Swear Jar: What Do the F-Words Mean to Youth with Impairments? 
• CanChild Centre (2013) GMFM Score Sheet.  
• World Health Organization (WHO) (2024) Motor Development Milestones.  
• Centers for Disease Control and Prevention (CDC) (2024) CDC’s Developmental Milestones.  
• Healthy Children (2024) Does My Child Have Physical Developmental Delays? (Healthy Children is a website of the American Academy of Pediatrics.) 
• Cerebral Palsy Alliance (2015) Types of Cerebral Palsy.  
• CanChild Centre (2007) Gross Motor Function Classification System Expanded and Revised.  
• CanChild Centre (2018) GMFCS Video.  
• Cerebral Palsy Foundation (2016) Insights from Experts: Motor Classification.  
• CanChild Centre (2011) GMFCS Family Report Questionnaire. (Scroll down to find separate sheets for each of the four age groups: 2–4, 4–6, 6–12, and 12–18.) 
• MACS (2010) Manual Ability Classification System for Children with Cerebral Palsy 4–18 Years.  
• BMFM (2016) Bimanual Fine Motor Function.  
• MACS (2013) Mini-Manual Ability Classification System for Children with Cerebral Palsy 1–4 Years of Age.  
• CFCS (2011) Communication Function Classification System (CFCS).  
• Pennington et al. (2010) Viking Speech Scale (VSS).  
• Sussex Community NHS Foundation Trust (2024) Eating and Drinking Ability Classification System (EDACS).  
• Stella Maris Infant Lab for Early Intervention (2021) Visual Function Classification System (VFCS).  
• CanChild Centre (n.d.) On Track Measures.  

Chapter 2

• CanChild Centre (2024) Family-Centred Service.  
• Gillette Children’s (2022) Cerebral Palsy Road Map: What to Expect as Your Child Grows. (The road map covers all types of CP and all GMFCS levels. It is organized into four age groups from birth to age 18. It covers 10 areas of interest including mobility, musculoskeletal, and interventions.) 
• SickKids (2024) CPCHILD.  
• Physiopedia (n.d.) Development of the Child with Cerebral Palsy.  
• Cerebral Palsy Foundation (2016) The Brain.  
• Centers for Disease Control and Prevention (2001) Birth to 36 Months: Boys.  
• Centers for Disease Control and Prevention (2000) 2 to 20 Years: Boys.  
• Centers for Disease Control and Prevention (2001) Birth to 36 Months: Girls.  
• Centers for Disease Control and Prevention (2000) 2 to 20 Years: Girls.  
• Life Expectancy Project (2011) New Growth Charts. (These charts are "for height, weight, and BMI for boys and girls with cerebral palsy, stratified by GMFCS").  
• Centers for Disease Control and Prevention (2016) ROM Measurement Procedures: Knee Flexion and Extension.  
• Med School Made Easy (2013) Clonus.  

Chapter 3

• American Academy for Cerebral Palsy and Developmental Medicine (2016) Sialorrhea in Cerebral Palsy.  
• American Academy for Cerebral Palsy and Developmental Medicine (2021) Respiratory Health in Cerebral Palsy.  
• Cerebral Palsy Foundation (2021) The power of wheels.  
• Cerebral Palsy Foundation (n.d.) GO BABY GO.  

Chapter 4

• Cincinnati Children’s (2008) Guidelines for Determining Frequency of Therapy.  
• Gillette Children’s (2024) Rehabilitation Therapies Episodes of Care in Childhood and Adolescence.  
• Novak I, Morgan C, Fahey M, et al. (2020) State of the evidence traffic lights 2019: Systematic review of interventions for preventing and treating children with cerebral palsy. 
• Loughborough University Peter Harrison Centre for Disability Sport (n.d.) Fit for Life.  
• Loughborough University Peter Harrison Centre for Disability Sport (n.d.) Fit for Sport.  
• Cerebral Palsy Foundation (n.d.) Home modifications.  

Chapter 5

• American Academy for Cerebral Palsy and Developmental Medicine (2024) Cerebral palsy and dystonia.
• Gillette Children’s (2024) Typical ROMs. 
• American Academy for Cerebral Palsy and Developmental Medicine (2017) Hip Surveillance in Cerebral Palsy.  
• American Academy for Cerebral Palsy and Developmental Medicine (2016) Osteoporosis in cerebral palsy.
• Gillette Children’s (2024) Management of Scoliosis. 

Chapter 6

• Triple P (n.d.) Parenting Program.

Chapter 7

• Novak I, Morgan C, Fahey M, et al. (2020) State of the evidence traffic lights 2019: Systematic review of interventions for preventing and treating children with cerebral palsy. 

Chapter 8

• Got Transition  
• American Academy for Cerebral Palsy and Developmental Medicine (2024) Lifespan Journal Digest.  

Chapter 9

• Centers for Disease Control and Prevention (2022) BMI.  

Chapter 10

None

Chapter 11

• CanChild Centre (2024) What Is Research?  
• Cochrane
• Oxford Centre for Evidence-Based Medicine (2011) Levels of Evidence: Introductory Document.  
• Oxford Centre for Evidence-Based Medicine (2019) Glossary.  
• Gillette Children’s (2024) Family engagement in research.

Further Reading: Books

• Cerebral Palsy: A Complete Guide for Caregiving  
  2017, John Hopkins University Press  
  Freeman Miller and Steven Bachrach and The Cerebral Palsy Center at Nemours/Alfred I. duPont Hospital for Children 
• Cerebral Palsy: From Diagnosis to Adult Life 
  2012, Mac Keith Press  
  Peter Rosenbaum and Lewis Rosenbloom  
• Cerebral Palsy: Science and Clinical Practice (Clinics in Developmental Medicine)  
  2014, Mac Keith Press  
  Edited by Bernard Dan, Margaret Mayston, Nigel Paneth, and Lewis Rosenbloom 
• Developmental Disability and Aging  
  2009, Mac Keith Press  
  Edited by Gregory O’Brien and Lewis Rosenbloom
• Finnie’s Handling the Young Child with Cerebral Palsy at Home 
  2009, Butterworth Heinemann Elsevier  
  Edited by Eva Bower 
• Physiotherapy and Occupational Therapy for People with Cerebral Palsy  
  2010, Mac Keith Press  
  Edited by Karen Dodd, Christine Imms, and Nicholas Taylor  

Further Reading: Websites

The following are useful websites (listed in alphabetical order). Others were included throughout the book.  

• American Academy for Cerebral Palsy and Developmental Medicine (AACPDM): The AACPDM is an academy of health professionals "dedicated to providing multidisciplinary scientific education and promoting excellence in research and services for the benefit of people with and at risk for CP and other childhood-onset disabilities." 
• BlazeSports America: This US national sports organization supports people with physical disabilities. 
• CanChild Centre for Childhood Disability: CanChild is a nonprofit research and educational centre at McMaster University in Ontario, Canada. It offers resources for both professionals and families on a variety of developmental conditions. 
• Centers for Disease Control and Prevention (CDC): The CDC is the leading national public health institute in the United States. 
• Cerebral Palsy Alliance: The Cerebral Palsy Alliance is an Australian treatment and research center. 
• Cerebral Palsy Daily Living: An educational resource for families of children with CP. 
• Cerebral Palsy Foundation: Its mission statement is "leading research, innovation, and collaboration that changes lives for people with cerebral palsy—today." Its resources include a video library with a collection of videos on different aspects of CP that is well worth exploring. It also publishes useful fact sheets. 
• Cerebral Palsy Research Network (CP Research Network): CP Research Network is a group of doctors, therapists, and patient advocates "collaborating to improve treatments and outcomes for people with CP." The network hosts MyCP for the CP community to participate in research and discussions. 
• Cerebral Palsy Sport: This UK national sports organization supports people with CP and other physical disabilities. 
• Childhood Disability LINK: Childhood Disability LINK is a Canadian organization "Linking Information and New Knowledge" on childhood disability to service providers and families. 
• Developmental Medicine & Child Neurology: This journal publishes many papers relevant to spastic diplegia. Papers are freely available online one year after publication. The journal also publishes plain-language summaries to make the research more accessible. 
• Everyday Health: Everyday Health produces content related to health and wellness. It includes a section on CP. 
• Kids Brain Health Network: Kids Brain Health is a Canadian network of researchers and health professionals dedicated to helping children with neurodisabilities and their families. 
• Peter Harrison Centre for Disability Sport: The Peter Harrison Centre for Disability Sport is an internationally renowned disability sport research center located at Loughborough University in the United Kingdom.
• Scope UK: Scope is a disability equality charity in England and Wales.
• Surveillance of CP in Europe (SCPE): This group aims to "develop best practice in monitoring trends in CP and to disseminate knowledge to health professionals, policy makers, patients, and families, to provide information for resource planning, and raise standards of care for patients with CP."
• United Cerebral Palsy (UCP): UCP is a US organization that "educates, advocates, and provides support services to ensure a life without limits for people with a spectrum of disabilities."
• UP–the adult cerebral palsy movement: UP is a UK-based adult CP organization. Its "movement is about positively making the changes in ourselves, and in society, so that we can live our best lives."