Development/Care/Parenting:

Breastfeeding and Down syndrome
Developmental Milestones
Developmental Comparison Chart
Gross Motor Development
Healthy Start
Local Ds Support Groups
Speech & Language Development

Early Intervention: 

Birth to 3: Early Intervention
California Department of Developmental Services
California Early Start Program
How the Regional Center System Works
Infant Development Association of California
San Diego Regional Center  

Child Care/Respite: 

Child Care Resources
YMCA Childcare Resource Service
Respite Care

Español: 

Futuros padres y padres primerizos
Todos Los Niños son Especiales
Para entender un diagnóstico de síndrome de Down
La Atención de salud
Intervención temprana
Encuentre apoyo
Cuide a su familia
Perspectiva de los padres
Un Futuro Prometedor Juntos (NDSS)
Mañanas Brillantes

Individuals with Down syndrome are diverse learners and develop at their own pace. Research has demonstrated that people with Down syndrome can achieve and benefit from rich academic opportunities and therapeutic interventions in environments conducive to their individual educational needs. It is important for parents, educators and service providers to maintain high standards and expectations for youth and adults with Down syndrome.

Programs:

California Early Start Program
San Diego Head Start
YMCA Preschool For All
San Diego Center for Children Early Childhood Services

Websites:

California Association for the Education of Young Children
California Early Childhood Technical Assistance Center
California Dept. of Education – Special Education Division
Center for Early Education
Center for Early Literacy Learning
Center on Inclusion in Early Childhood
Child Care Law Center
Council for Exceptional Children Early Childhood Division
Down Syndrome Education International 
Infant Development Association of California
National Association for the Education of Young Children
National Early Childhood Technical Assistance Center
San Diego Council on Literacy
Supporting Early Education Delivery Systems
Together We Grow
US Dept. Special Ed Early Intervention
WestEd Center for Prevention and Early Intervention
Zero to Three Early Language & Literacy

Resources:

Free Reproducible Early Literacy Activities

Español:

Intervención Temprana

Individuals with Down syndrome are diverse learners and develop at their own pace. Research has demonstrated that people with Down syndrome can achieve and benefit from rich academic opportunities and therapeutic interventions in environments conducive to their individual educational needs. It is important for parents, educators and service providers to maintain high standards and expectations for youth and adults with Down syndrome.

TheIndividuals with Disabilities Education Act (IDEA) is an important piece of civil rights legislation that details the rights of an individual with a disability to a free appropriate public education (FAPE) in the least restrictive environment (LRE). IDEA is the federal law which governs how states and public agencies provides early intervention, special education and related services to more than 6.5 million eligible youth and adults with disabilities.

A free appropriate public education (FAPE) requires that students receive special education and related services that meet their unique needs and prepare them for adult life, including post-secondary options.

IDEA guarantees that each child will be educated in the least restrictive environment (LRE), which means that a student who has a disability should have the opportunity to be educated with typical peers, to the maximum extent possible, in a general education classroom, in the school that they would attend if they did not have a disability.

Under IDEA, an Individualized Education Program (IEP) must be developed by a team of professionals, including the parents, that defines the special education and related services that are necessary for the child to be involved in and make progress in the general education curriculum and to meet each of the child’s other educational needs as a result of the disability.

Family involvement is paramount to the overall growth, development and success of their child. It is important for parents to fully understand the educational system, services and rights that are afforded to families and students with exceptional needs. Parents play a key role in the education of their child and should be respected as a valued member of the IEP team.

Universal Design for Learning (UDL) is a framework for designing curricula that enable all individuals to gain knowledge, skills, and enthusiasm for learning. UDL provides rich supports for learning and reduces barriers to the curriculum while maintaining high achievement standards for all. UDL addresses the need for multiple approaches to meet the needs of diverse learners. View UDL Resources

Assistive Technology is any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities. AT service is directly assisting an individual with a disability in the selection, acquisition, or use of an assistive technology device. The Assistive Technology Act of 1988 is the law governing assistive technology in the United State of America (it was renewed in 1998).

Tools:

Graphic Organizers
Homework Tips for the Learning Disabled
Organization Strategies for Students with Learning Disabilities

Websites: 

A Composite of Laws Search Engine (California Education Code)
California Education Laws, Regulations & Waivers
Center for Appropriate Dispute Resolution in Special Education
California Parent Center
Center for Development & Learning
Council for Exceptional Children
Disability Rights Education Fund
EDLAW Center
Exceptional Family Resource Center Educational Resources 
National Coalition for Parent Involvement in Education
Online Homework Help (San Diego County Library)
PACESETTER Special Education Newsletter
Parent Advocacy Coalition for Educational Rights
Regional Resource Center Program
Resources in Special Education Library  
San Diego Braille Institute
San Diego Homeschooling
Team of Advocates for Special Kids
U.S. Department of Education
U.S. Office of Special Education Programs

Español:

Inclusión
La educación primaria y secundaria

Although accommodation rights are provided to adults with disabilities through the Americans with Disabilities Act and the Rehabilitation Act of 1973, services are not provided automatically. Learn more about methods to advocate for accommodations in secondary and postsecondary education and beyond.

Catching the Wave from High School to College
College for Students with Intellectual Disabilities (NDSS webinar) – Slides  l  Video
High School Student Transition Portfolio
Post Secondary Education for Individuals with Ds
Thinking About Tomorrow

Websites:

Programs:

Bellevue Community College Venture Program – Associates Degree Program for students with developmental disabilities.
UCLA Extension – the Pathway Program is for young adults ages 18-25 with intellectual disabilities. Call 310-206-2337.

Recursos en Español

Rapid advances in clinical treatment and greater medical attention to people with Down syndrome during the 20th century have increased the life expectancy of these individuals. As many adults with this genetic condition live into their 50s, 60s and beyond, this new longevity needs to be incorporated into lifetime planning when a child is born. The law assumes that people over the age of 18 are competent to manage their own affairs regardless of disabilities, and parents are no longer considered legal guardians after this point. If protective provisions are not in place, the courts will make important decisions. Physical, social, financial and legal issues must be considered, as well as siblings and service agencies. A well thought out life plan is essential for long-term quality life for your loved one with Down syndrome. The consequences of not planning are too great to ignore. It is important to begin Life Planning early in your child’s life.

Future Planning Handbook
Estate Planning
Thinking About Tomorrow
Planning for the Future
Special Needs Solutions Planning

Español:

Transición

Why are medical researchers interested in Down syndrome?

Down syndrome is a developmental condition. As researchers learn more about the molecular genetics and other aspects of Down syndrome, they also obtain valuable information about human development and can advance the study of many biological processes. In addition, individuals with Down syndrome have a higher incidence of certain medical conditions, and the study of Down syndrome may yield important breakthroughs in those areas. Research in Down syndrome provides a way for looking at many important problems:

• Cognitive Dysfunction Reversed in Mouse Model of Down Syndrome
A study by neuroscientist William C. Mobley, MD, PhD, chair of the Department of Neurosciences at the University of California, San Diego School of Medicine, and colleagues at Stanford University Medical School has demonstrated a possible new approach to slowing the inevitable progression of cognitive decline found in Down syndrome.

Clinical Trials & Research Studies:

A clinical trial is a research study conducted with patients to determine if a particular new medical treatment, drug or device is effective. In some cases, trials are used to determine if existing therapies can be used successfully in new ways. Usually, before a new therapy is evaluated in a clinical trial, it has already been tested rigorously in the laboratory (to gauge its effectiveness) and in animals (to see how it affects a living organism). Once researchers are convinced that a particular therapy holds the promise of being safe and effective, they use clinical trials to evaluate the therapy in humans.

• Adult Down Syndrome Clinic at UC San Diego
• BP25543 Clinical Research Study at UC San Diego
  
• National Down Syndrome Society Clinical Trials webpage
• Aricept Clinical Research 
  
• Roche Study of RG1662 in Individuals with Down Syndrome
• UC Davis Medical Center M.I.N.D. Institute Research Study
• UCLA Research Study
• UCSD DSCRT Clinical Trials
• UCSD Yoga Study
• Social Participation Online Study (3 yr olds with DD)
   

Other Studies:

• Concept of Self Study
  
• Down syndrome & Video Games Study

Articles:

• Dr. Alberto Costa’s Drug Research
• Drug May Increase Cognition for People with Downs Syndrome
• Down Syndrome and Alzheimer’s Webinar Information
  
• Gene Causes Retardation in Down syndrome
• NIH Establishes Down syndrome Patient Registry
• Duke University Aricept Trial
• Down Syndrome Quarterly Research Journal 

Video Links:

• Congressional Down Syndrome Caucus Research Hearing
  

Research Websites:

• Down Syndrome Center for Research & Treatment (San Diego)
• Center for Treatment and Research of Down Syndrome (Stanford University)
• Down Syndrome Research and Treatment Foundation
  
• Down Syndrome Research Foundation
• Center for Motor Behavior in Down Syndrome
• Down syndrome Clinical Trials & Research Studies
  

Información en Español:

• Investigación

What Is Down syndrome?

Down syndrome is genetic condition, which causes delays in physical, cognitive and language development due to the presence of an extra chromosome on the 21^st pair. People with Down syndrome have 47 chromosomes instead of the usual 46. The degree of development delay affecting the individual varies. Like all people, individuals with Down syndrome thrive in the home, school environment, workplace and community when afforded the full spectrum of life opportunities and experiences.

Down syndrome occurs in approximately one in every 733 live births and affects people of all ages, races and socioeconomic levels. Each year approximately 5,000 to 6,000 babies are born with Down syndrome and it is estimated that there more than 400,000 people with Down syndrome living in the United States.

At present, it is not known what causes Down syndrome. The condition results from an error in cell division call non-disjunction. Down syndrome usually occurs during the development of the sperm or the egg before conception, or immediately following conception. The extra chromosome can originate in either the mother or father, but more often in the mother. The risk of having a child with Down syndrome increases with advancing age of the mother. However, most babies with Down syndrome are born to mothers under the age of 35 years. It has been reported that the age of the father may also be a contributing factor in the occurrence of Down syndrome. It is essential for both parents to understand that they are not personally responsible for the extra chromosome, or that their baby has Down syndrome. Nothing in the parent’s diet, activity, emotional state or past experiences caused this genetic anomaly.

Chromosome Subtypes

A normal set of chromosomes has 22 evenly paired chromosomes plus the sex chromosomes. In the illustration below, the XX means that this person is a female. The test in which blood or skin samples are checked for the number and type of chromosomes is called a karyotype.          

Normal Set of Chromosomes

There are three main types of chromosome variations in Down syndrome:

Trisomy 21: The majority of people with Down syndrome, approximately 95%, have an extra 21 chromosome. Instead of the normal number of 46 chromosomes in each cell, individuals with Trisomy 21 syndrome have 47. Prior to or at conception, a pair of 21^st chromosomes in either the sperm or the egg fails to separate (non-disjunction). As the embryo develops, the extra chromosome is replicated in every cell of the body.

Trisomy 21

Translocation: The extra 21 chromosome is attached or translocated on to another chromosome, usually on chromosome 14, 21, or 22. When translocation is determined, a chromosomal analysis of the parents is recommended. Translocation occurs in approximately 3%-4% of people with Down syndrome.

Translocation

Mosaicism: This variation occurs in approximately 1%-2% of the people with Down syndrome. Some cells have 47 chromosomes and others have 46. As a result, the individual may have fewer of the usual physical characteristics. How the baby is affected depends on where these cells are in the body. At the present time, there is not much research on the similarities and differences between simple trisomy 21 and mosaic trisomy 21.

How Is The Diagnosis Made?

A baby with Down syndrome is typically identified at birth by the presence of certain physical traits. The most common characteristics include low muscle tone, a slightly flattened facial profile and upward slant to the eyes. Other characteristics include low birth size and weight and possibly heart murmurs. Because these characteristics may be present in babies without Down syndrome, a chromosomal analysis is necessary in order to confirm the clinical diagnosis. A blood sample is taken from the baby to perform this test.

Prenatal Diagnosis

If you have recently received a prenatal diagnosis that your baby has Down syndrome, you may feel overwhelmed by this information and inadequately prepared for the future of your child. The Down Syndrome Association of San Diego offers emotional support, information and resources. The All Children Are Special Family Resource Guide is an invaluable source of information providing direction and current information.

Family Resource Guide

All Children Are Special was designed to assist parents in gaining insight and knowledge about Down syndrome. You will soon discover that your baby… like all babies… is unique. Down syndrome is just one aspect of your child’s whole being. This Family Resource Guide provides current information about Down syndrome and resources, both local and national. Additionally, at your request, we can arrange for a “support parent” to contact you. Almost without exception, parents will agree that their primary source of information and support has come from sharing their experience with one another. No one else will understand your emotions better. View the All Children Are Special Family Resource Guide. This guide is also available in Spanish. Vea Todos los niños son especiales guía de recursos para familias.

Speaking about Down syndrome

People with Down syndrome should always be referred to as people first. Instead of “a Down syndrome child,” it should be “a child with Down syndrome.” Also avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.” Down syndrome is a condition or a syndrome, not a disease. People “have” Down syndrome, they do not “suffer from” it and are not “afflicted by” it. While it is unfortunately clinically acceptable to say “mental retardation,” you should use the more socially acceptable term “intellectual disability”. The Down Syndrome Association of San Diego and The National Down Syndrome Society strongly condemn the use of the word “retarded” in any derogatory context. Using this word is hurtful and suggests that people with disabilities are not competent.

The preferred spelling is Down syndrome, rather than Down’s syndrome. Many dictionaries contain both spellings (with or without an apostrophe s), but the preferred usage in the United States is Down syndrome. This is because an “apostrophe s” connotes ownership or possession. Down syndrome is named for the English physician, John Langdon Down, who characterized the condition, but did not have it. The AP Stylebook recommends using “Down syndrome,” as well.

Articles:

Español:

Hojas de datos sobre el síndrome de Down
Mitos y realidades
Todos los niños son especiales

Healthcare Guidelines for Individuals with Down syndrome 

The Down Syndrome Health Care Guidelines follow an individual’s development from birth through adulthood and provide information about potential health concerns at each stage. They are compiled by the Down Syndrome Medical Interest Group, a national affiliation of health care providers who specialize in caring for individuals with Down syndrome. The guidelines help define the standards of quality care for individuals with Down syndrome. In addition to specific recommendations for screening tests, they include information about the kinds of medical conditions that individuals with Down syndrome are at risk for and suggestions for early intervention, diet and exercise, and other issues across the lifespan.

Healthcare Guidelines for Individuals with Down syndrome:

Healthcare Guidelines At-A-Glance

Healthcare Guidelines – Full Text

Guía de salud para personas con síndrome de down: 

Pautas de los cuidados de salud

Guía de salud

Guide for Physicians Informing Parents their Child has Down syndrome