Publications About CdLS
From the earliest days, a hallmark service of the CdLS Foundation has been its range of materials for parents, professionals and the public.
Since the first issue of Reaching Out in 1977, the Foundation has kept its constituency up-to-date on issues relevant to the syndrome through various publications, articles and other materials.
In addition to Reaching Out (published quarterly), the Foundation produces several other publications. These include Facts about CdLS, Facing the Challenges, and our new parent packet, Starting the Journey: Information and Support for New Parents.
Recommended reading for parents/caregivers:
Starting the Journey:
Information and Support for New Parents
This packet of basic information helps you and your child—no matter how old he or she is—receive the best care possible. It addresses topics related to growth and feeding, education, genetic information, and much more.
Request a copy of Starting the Journey »
Facts About CdLS brochure
This brochure provides answers to some of the most frequently asked questions about CdLS.
Download a copy of the Facts About CdLS brochure»
Management and Treatment Guideline Cards
The treatment guideline cards highlight routine care for people with CdLS at different ages, including infancy, early and late childhood, adolescence, and adulthood.
Request a copy of Management and Treatment Guideline Cards »
Reaching Out
The quarterly newsletter—published continuously since 1977—contains relevant and timely information for families, caregivers and professionals. Each issue covers medical, behavioral and/or educational issues that are specific to individuals with CdLS. The magazine-style publication also highlights research news, events and personal stories from families and caregivers.
View previous issues of Reaching Out below:
- Spring 2013: The Importance of GI Testing & A Closer Look at GI and Volvulus
- Winter 2013: Making Sense of Special Needs Planning & A Closer Look at Transition: Learn. Work. Live
- Fall 2012: Research updates & CdLS and Autism
- Summer 2012: Anesthesia & Behavior Plans for School
- Spring 2012: Sensory Integration & In the School: Deaf-Blindness
- Winter 2012: Dental Issues & Cause of Death
- Fall 2011: Immunodeficiency & Nutritional Issues
- Summer 2011: Foundation's Future, Smooth Transitions at School & Will my Child Speak?
- Spring 2011: Gearing up for Conference, Gynecological Issues & Development Needs
- Winter 2011: Speech and Language & Evaluations at School
- Fall 2010: Challenging Behavior, Pharmacotheraphy, Self-Injurious Behavior
- Summer 2010: Transistion & Mapping a Plan for your Child's Future
- Spring 2010: Sleep Disturbance & G-Tube Feeding
- Winter 2010: Eye Disorders & Hearing Loss
- Fall 2009: Parenting Stress, Behavior, Dental Anesthesia, & Thrombocytopenia
- Summer 2009: Communications & Preparation for School
- Spring 2009: Benefits of Therapy & Orthopaedic Issues
- Winter 2009: Diet and Nutrition & Feeding Issues
Critical Care Information
Since Foundation staff can’t always be accessible by phone in an emergency, the following materials provide guidance to medical personnel during critical times.
View Critical Care Information »
New Family Newsletter
A compilation of articles written by parents, doctors and others, offering information and support.
Request a copy of the New Family Newsletter »
Recommended reading for relatives and friends:
A Booklet for Grandparents
Grandparents share words of wisdom and personal stories about how CdLS affects their families.
Request a copy of A Booklet for Grandparents »
Facts About CdLS brochure
This brochure provides answers to some of the most frequently asked questions about CdLS.
Download a copy of the Facts About CdLS brochure»
Reaching Out
The quarterly newsletter—published continuously since 1977—contains relevant and timely information for families, caregivers and professionals. Each issue covers medical, behavioral and/or educational issues that are specific to individuals with CdLS. The magazine-style publication also highlights research news, events and personal stories from families and caregivers.
View previous issues of Reaching Out below:
- Spring 2013: The Importance of GI Testing & A Closer Look at GI and Volvulus
- Winter 2013: Making Sense of Special Needs Planning & A Closer Look at Transition: Learn. Work. Live
- Fall 2012: Research updates & CdLS and Autism
- Summer 2012: Anesthesia & Behavior Plans for School
- Spring 2012: Sensory Integration & In the School: Deaf-Blindness
- Winter 2012: Dental Issues & Cause of Death
- Fall 2011: Immunodeficiency & Nutritional Issues
- Summer 2011: Foundation's Future, Smooth Transitions at School & Will my Child Speak?
- Spring 2011: Gearing up for Conference, Gynecological Issues & Development Needs
- Winter 2011: Speech and Language & Evaluations at School
- Fall 2010: Challenging Behavior, Pharmacotheraphy, Self-Injurious Behavior
- Summer 2010: Transistion & Mapping a Plan for your Child's Future
- Spring 2010: Sleep Disturbance & G-Tube Feeding
- Winter 2010: Eye Disorders & Hearing Loss
- Fall 2009: Parenting Stress, Behavior, Dental Anesthesia, & Thrombocytopenia
- Summer 2009: Communications & Preparation for School
- Spring 2009: Benefits of Therapy & Orthopaedic Issues
- Winter 2009: Diet and Nutrition & Feeding Issues
Foundation Focus
Foundation Focus is a semiannual newsletter specifically for donors and friends of the Foundation. It takes a deeper look at various aspects of the Foundation, including "Super Siblings," event highlights, fundraising spotlights and donor profiles.
Articles About CdLS
CdLS-related articles covering various topics such as medical, behavioral and educational issues that are specific to individuals with CdLS are available to download below.
Anesthesia
- Anesthesia for People with CdLS
- Encounters with Anesthesia
- New Research on Anesthetics and Airways Underway
Behavior
- Challenging Behavior
- Behavioral Challenges in Children and Adults with CdLS
- Management of Anxiety and Aggression
- Self-Injurious Behavior
- Put an End to Challenging Behavior
- Pharmacotherapy in CdLS
- Self-Injurious Behavior in CdLS
- Behavior Plans in Your Child's Individualized Education Plan (IEP)
- A Closer Look at Behavior Plans
- Similarities and Differences of CdLS and Autism
Causes of Death
Dental
Development
- Development Skills Chart
This developmental chart was derived from the results of a questionnaire, comparing the percentage of individuals that had completed a certain skill to the total group (tabulated by age). - Growth Charts (Growth Charts For Boys) (Growth Charts For Girls)
CdLS Foundation Medical Director Antonie D. Kline, M.D., and her colleagues developed gender-specific growth charts based on research and data collected over many years. Since children with CdLS are often compared to a typical child’s growth rate, many are incorrectly diagnosed with “failure to thrive,” a condition that focuses primarily on weight gain. - Older Individuals with CdLS
- The “Mild” Side of CdLS: The Families' Perspective
- Puberty and Adolescence in CdLS: A Survey of the Changes
- Developmental Need of Children with CdLS
- Closer Look: Postural Control
Education
- Assisting the Social Development of Children with CdLS
- Communicating with Symbols
- Considerations for Using One-To-One Support in School
- CVI : What You Should Know
- Evaluating a Pre-School Program for Children with CdLS
- Helping Children with CdLS Stay Focused in School
- How to Develop your Child’s Best Advocate
- Back to School Basics
- Closer Look in the Classroom
- Smooth Transitions at School
- Behavior Plans in Your Child's Individualized Education Plan (IEP)
Estate Planning
Eyes, Ears and Nose
- CdLS and the Eye
- Common Eye Disorders in CdLS
- Ear, Nose and Throat Health
- Eye Care: The Families Perspective
- In the School: Deaf-Blindness
- A Closer look at Hearing and Vision Loss
- PA Deaf-Blind Initiative video: Vision and Hearing Loss in CdLS
- Hearing Loss and CdLS
Family and Emotional Issues
- Dealing with Depression
- Grieving: Guilt Can Motivate Change
- Grieving: How to be a Survivor
- Grieving: Like it or Not, It Serves a Real Purpose
- Grieving: Take Time to Grieve
- The Impact of Childhood Disability: The Parent’s Struggle
- Parents: A Crucial Resource
- Public Scrutiny: As Different as Snowflakes
- Raising a Child with a Disability: Welcome to Holland
- Living Arrangement Choices: Stories from the Homefront
- Taking Care of Me
Feeding and Gastroesophageal
- Coping with Food Allergies
- Daily Caloric Requirements
- Feeding Issues in Individuals with CdLS
- GI Letter for Medical Care Provider
- Intensive Feeding Programs: A Family Perspective
- Basics of Tube Feeding
- Closer Look: G-tubes A Tale of Two Children
Genetics and Diagnosis
Gynecology
Immunodeficiency
Neurology
Nutrition
Orthopaedics
- A Closer Look at Orthopaedic Issues
- Walking and Orthopaedic Issues
- Orthopaedic Issues in CdLS
- When to See an Orthopaedic Surgeon
Sensory Issues
Sleep
Speech & Language
Therapies
- More than Just Friends
- Music Therapy: Therapy that is Music for the Mind and Soul
- Music Therapy: What to Listen for when Selecting a Music Therapist
- Occupational Therapy and CdLS: Building on Strengths for a Lifetime
- Physical Therapy and CdLS
Transition
Información en Español
Awareness Materials
- Awareness Flier
- Facts About CdLS brochure
- "Find One Child"
This video highlights information about CdLS and services the Foundation provides. It’s a great tool for raising awareness of CdLS among your family and friends, colleagues and community leaders. - Public Service Announcement
Media Room
Visit the Media Room to view CdLS Foundation press releases, CdLS-related news coverage and our Press Kit for downloadable images and quick facts about CdLS.
