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Faith communities are a gathering of individuals who have like beliefs, share in regular rituals while encouraging inclusivity. Among the members are often those that have intellectual disabilities. For example, almost every faith community has members that have been born with Down Syndrome. Down Syndrome is one of the most common and easily identified chromosomal conditions associated with intellectual disabilities. This genetic disorder is caused by a chromosomal formation providing an extra chromosome. So individuals with Down Syndrome have 47 chromosomes where other people are born with 46 chromosomes.  Individuals born with Down Syndrome are usually easily identified at birth. Down syndrome is not a disease, nor is it contagious. Today, some diagnosis are made in utero if test are available and administered checking on the development of the fetus. In most cases, the diagnosis of Down syndrome is determined from results from a chromosome test administered after the birth of the child.

Just as there are a variety of intellectual abilities found in a family, individuals with Down Syndrome can display extensive variation in mental abilities, behavior, and developmental progress. Down Syndrome individuals differ in ability, just as any children and adults do Given that there is a wide variety of ability within the Down Syndrome community, it is important that each child as early as possible is exposed to opportunities for engagement, education and opportunities for play and enjoy life. It is very important that families and members of the community place few limitations on potential capabilities and possible achievements. Each child with Down syndrome has his or her own talents and unique capacities, and it’s important to recognize these and reinforce them.

Family and community life are very important as children and adults with Down Syndrome  have many of the same needs as other children and adults. Being included, welcomed and engaged allows the person with Down Syndrome to learn new things, meet new people and enjoy their life contributing as much as they are capable of as any other person.

Children with Down Syndrome experience many of the same mood changes, emotions, challenges as other children. Each child and adult with Down Syndrome is to be welcomed, supported and encouraged to have positive experiences in their community of faith.

While there are over fifty indications of Down Syndrome, all of the characteristics are hard to find in one person. Every child or adult with Down Syndrome is different.  Some common characteristics include:

·         Poor muscle tone;

·         Slanting eyes with folds of skin at the inner corners (called epicanthal folds);

·         Hyperflexibility (excessive ability to extend the joints);

·         Short, broad hands with a single crease across the palm on one or both hands;

·         Broad feet with short toes;

·         Flat bridge of the nose;

·         Short, low-set ears; and

·         Short neck and small head;

·         Small oral cavity; and/or

·         Short, high-pitched cries in infancy.

Individuals with Down syndrome are usually smaller than their nondisabled peers, and their physical as well as intellectual development is slower.

Today there are a significant number of resources for parents of children with Down’s Syndrome. Early intervention is a system of services designed to help infants and toddlers with disabilities (before their 3rd birthday) and their families. It’s mandated by federal law—the Individuals with Disabilities Education Act (IDEA), the nation’s special education law. Staff work with the child’s family to develop what is known as an Individualized Family Services Plan, or IFSP. The IFSP will describe the child’s unique needs as well as the services he or she will receive to address those needs. The IFSP will also emphasize the unique needs of the family, so that parents and other family members will know how to help their young child with Down Syndrome.

References:·

Down Syndrome | Center for Parent Information and Resources (parentcenterhub.org)

Family Doctor. (2005).  Down syndrome: How to know if your child has Down syndrome. This article is no longer available, but you can read the 2014 article on Down syndrome, at: https://familydoctor.org/condition/down-syndrome/

Centers for Disease Control and Prevention. (2016). Facts about Down syndrome. Atlanta, GA: Author. Available online at:
https://www.cdc.gov/ncbddd/birthdefects/downsyndrome.html


Suggested Topics for Faith Community Member Education

Educational program for siblings of Down Syndrome children

Fasten Your Seatbelt-

A Crash Course on Down Syndrome for Brothers and Sisters
Skotko, Brian and Susan Levine (Woodbine House, 2009). Uses a question and answer format to address questions from teens who have a sibling with Down syndrome.

Sibshops-

Meyer, Don and Patricia Vadasy, revised edition (Brookes Publishing, 2008). A guide to organizing workshops for siblings according to the SibShop model.

The Sibling Slam Book-

Meyer, Don, editor (Woodbine House, 2005). Eighty teenagers talk about what it is like to have a brother or sister with special needs.

The Sibling Survival Guide-

Indispensable Information for Brothers and Sisters of Adults with Disabilities
Meyer, Don and Emily Holl, editors (Woodbine House, 2014). Advice for siblings on topics ranging from communication to medical and legal issues.

Views from Our Shoes-

Meyer, Don, editor (Woodbine House, 1997). Essays from children who have a sibling with a disability.

We'll Paint the Octopus Red-

Stuve-Bodeen, Stephanie (Woodbine House, 1998). A little girl prepares to welcome her new baby brother with Down syndrome. Ages 3-7.

Educational Program for parents

Your Loved One is Having a Baby with Down Syndrome-

When you learn that someone you love is expecting a baby with Down syndrome, you naturally have concerns, and wonder what to say and do. This book will help you through your initial, normal reactions of sadness, shock, and worry, and give you the information and perspective you need to welcome a baby with Down syndrome.

Information on Down Syndrome

National Association for Down Syndrome | Online Support (nads.org)



Resources

National Down Syndrome Society
The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity to realize their life aspirations. NDSS is committed to being the national leader in enhancing the quality of life, and realizing the potential of all people with Down syndrome.

National Down Syndrome Congress
It is the purpose of the National Down Syndrome Congress to create a national climate in which all people will recognize and embrace the value and dignity of people with Down syndrome.

Down Syndrome Health Issues
News and information for parents provided by a pediatrician and parent of a child with Down syndrome.

Your Genes, Your Health
A parent’s guide to facts and resources about Down syndrome, funded by the Josiah Macy Junior Foundation.


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