Down Syndrome

Down syndrome, also called Trisomy 21, is a genetic  variation in which an individual has three copies of chromosome 21 instead of two.  This extra genetic material can cause a number of physical changes and a range of delays in cognitive and language development.   The degree of these challenges and delays varies between individuals.

 What are some of the common characteristics of Down Syndrome?

  • Slanting eyes with folds on inside corner
  • Poor muscle tone
  • Increased flexibility in the joints
  • Distinctive physical appearance
  • Health-related issues such as visual problems, mild to moderate hearing loss, speech difficulty and heart defects.
  • Cognitive delays

Down Syndrome Fact Sheet NICHCY Legacy

How common is Down Syndrome?

Down Syndrome is the most common chromosomal variation in the world found in people of all races, ethnic and economic groups.   In the United States about 5,000 babies a year (about 1 in 700) are born with Down Syndrome.

What help is there for babies and toddlers? 

 The Individuals with Disabilities Education Act (IDEA), our national special education law requires every state to offer a system of  supports and services to families of infants and toddlers with disabilities from birth to age three.  This system of support and services is called early intervention Your involvement as a family  in the process of evaluation and support to help your child is very important.   The most important first step is to  welcome your baby to your family and get to know your baby  beyond the label  of Down Syndrome.

What do I need to think about for my child’s IEP?

Children with Down Syndrome are eligible for special education and related services under IDEA.    IDEA requires the development of an Individualized Education Plan (IEP).  The IEP is a process that results in a document, the IEP, which guides the student’s education and is based on a good evaluation.   Based on the results of the evaluation, Parents and Educators School Personnel work together to make an educational plan  that provides supports, services, accommodations and modifications  that fit the individual student with Down Syndrome.   These support and services are designed to help the student learn the general education curriculum within the general education environment along with other students with and without disabilities.

The educational plan  for each student should be individualized and address the students’ needs  in all areas:  academic, social and adaptive, communication, as well as gross and fine motor development.  All students have strengths and these should be built upon as well.  Insuring consideration of these strengths is just one important contribution parents make to the educational planning team.  Within the overall context of individualization, and recognizing the uniqueness of each student, there are some tips that can serve as a guide to making the learning environment best for the student with Down Syndrome.     An individualized education plan is a key process for middle and high school students  as well.   Visit our website for more information on the IEP process.

  • DSNMC Education Guide (download)  TECHNIQUES FOR SUCCESS EDUCATION RESOURCE GUIDE- Strategies, tips, and considerations for the education of a student with Down Syndrome.

Is there technology that can help my child?

Assistive technology is a related service listed in IDEA.  Technology is a key to leveling the playing field for individuals with disabilities.  Check out theTechMatrix for suggestions for finding educational and assistive technology products for students with disabilities. Learn more on our Assistive Technology webpage.

Where can I find support?

National Down Syndrome Support Society: A Promising Future Together 

Down Syndrome and Education

Welcoming Babies with Down Syndrome  

Parenting a Child with Special Needs

Sibling Support Projects in Michigan

More links and organizations

Bridges4Kids Down Syndrome Information

Capital Area Down Syndrome Association  

National Down Syndrome Society Helpline 1-800-221-4602

National Down Syndrome Society Michigan Affiliates 

Down Syndrome Association of West Michigan  

Down Syndrome Education Online

Down Syndrome Guild of Southeast Michigan

Spanish Language Links

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