Educating Children with Velo-Cardio-Facial Syndrome, 22q11.2 Deletion Syndrome, and DiGeorge Syndrome

The 22q11.2 deletion syndrome, also known as velo-cardio-facial syndrome and DiGeorge syndrome, is relatively new. The genetic test to determine if a child has it has only been available since 1994. Educating Children with Velo-Cardio-Facial Syndrome, 22q11.2 Deletion Syndrome, and DiGeorge Syndrome, Third Edition, effectively blends the thoughtful research that has transpired within the past 25 years with practical and current educational strategies to better meet the needs of children with the 22q11.2 deletion syndrome and other developmental disabilities. With its expanded content, as well as new contributions from some of the most highly regarded experts in the field, Educating Children with Velo-Cardio-Facial Syndrome, 22q11.2 Deletion Syndrome, and DiGeorge Syndrome, Third Edition is an essential resource for teachers, parents, physicians, and therapists of children with this complicated learning profile.

To first address the scientific information that is needed to understand the syndrome and the implications of current research, expert contributors present the results of current studies involving brain abnormalities, language/learning profiles, medical needs, and psychiatric and behavioral difficulties. These valuable chapters are written in a reader-friendly manner to help parents, professionals, and teachers gain useful and necessary comprehension of the unique characteristics of the 22q11.2DS population.

The second part of the book is a practical guide to educating a child with 22q11.2DS from birth through adulthood. Divided into the various stages of development from preschool to adulthood, it includes information regarding the necessary tests special education teams should run, typical difficulties associated with learning, changes that occur with ability as the child matures, and behavioral problems in the school setting. 

New to the Third Edition

• Addition of recent research studies since 2012
• Current research and treatment options for mental health issues
• Expanded and enhanced coverage of bullying and the social/emotional aspects of the syndrome
• Discussion on the possibility of cognitive decline and how to address this at school
• More information on Common Core State Standards and standardized testing for children with disabilities, including a section on understanding test scores
• Homeschooling and other placement alternatives
• Executive functioning deficits, their impact in the classroom, and approaches to use
• Dealing with problem behaviors such as withdrawal and school refusal
• Cognitive remediation and new treatment strategies
• New math and reading remediation techniques
• New options for programming and post-secondary placements

Reviews of the Previous Edition

"As a parent and an occupational therapist, I recommend this resource about a rare condition that may require occupational therapy input for physical, cognitive, and possibly psychiatric reasons. The book has two parts: The first is scientific studies, and the second is educational interventions and evaluation of effective practices. Functional insights are specified from birth to adulthood. ...The editor is both a mother and a teacher with 38 years of experience. As an American, she provides extensive American resources as well as valuable contact information for centers of excellence in six other countries. I recommend this book for educators and for occupational therapists who work in mental health, pediatrics, and schools. As a parent of a child with this condition, I found it helpful and other parents may as well."
—Jude A. Driscoll, OT Reg. (PEI), Registered Occupational Therapist, TRE Facilitator Level I and II, in the Canadian Journal of Occupational Therapy (2013)

"This book had the ambitious goal of education the public and professionals about this syndrome and improving the lives of those affected by it. It is no mean feat that [largely] it succeeds. The first part provides an overview of the condition; the second focuses on classroom interventions. Recognized experts in the field write the background chapters...The second section on educational interventions is very practice and provides a wealth of advice that would benefit parents, educational staff and SLTs. The author is often at pains to point out the lack of evidence for advocated interventions in this condition but extrapolates from other related fields to make reasonable suggestions...[T]his remains a valuable resource."
—Anny Mayne, Specialist SLT, North Thames Regional Cleft Lip and Palate Service, in the Royal College of Speech and Language Therapists Bulletin (July 2013)

Preface

Acknowledgments

Contributors

Part I. Scientific Studies and Overview of the Syndrome

Chapter 1. Velo-Cardio-Facial Syndrome: Past, Present, and Future

Robert J. Shprintzen

Chapter 2. Introduction to Education and the Neurocognitive Profile

Donna Cutler-Landsman, Wendy Kates and, Tony J. Simon

Chapter 3. Cognition and the 22q11DS Brain: The Implications of Syndrome-Specific Deficits for School Performance

Joëlle Bagautdinova, Stephan Eliez, and Bronwyn Glaser

Chapter 4. Psychiatric Disorders and Treatment in 22q11.2 Deletion Syndrome

Lara Schwieger and Doron Gothelf

Chapter 5. Communication in Velo-Cardio-Facial Syndrome

Karen Golding-Kushner

Chapter 6. Childhood Illness in 22q11.2 Deletion Syndrome, VCFS, and DiGeorge and Its Impact on School Attendance and Performance

Anne Marie Higgins and Donna Cutler-Landsman

Part II. Educational Interventions and Evaluation of Effective Practices

Donna Cutler-Landsman

Chapter 7. Evaluation of Educational Interventions

Chapter 8. Early Intervention for Infants and Toddlers

Chapter 9. Getting Ready for School: Preschool (Ages 3–5)

Chapter 10. Entering a Formal School Education Program

Chapter 11. Building the Foundation: Kindergarten Through Second Grade (Ages 5–7)

Chapter 12. Gaining Expertise: Upper Elementary Grades Three Through Five (Ages 8–11)

Chapter 13. Exploring New Horizons: Middle School (Ages 11–14)

Chapter 14. Choices and Future Goals: High School (Ages 14–18)

Chapter 15. Transition to Adulthood: A Model Program (Ages 18–21)

Appendix A. Accommodations

Appendix B. Teacher Awareness Questionnaire (Answers)

Appendix C. Exercises for Understanding

Appendix D. Interpreting Test Scores

Index