News & Expectant Parents

One of the objectives of DSANI is to provide current information and support to parents as soon as their child is diagnosed. While we do not claim to be experts ourselves, we hope to help you sift through the wealth of information available, and find the most up-to-date and educational. Below are links to websites that provide insight and direction to some issues that you may be facing.

Through our Outreach Program, we offer "Expectant Parent Packets" and "New Parent Packets" of resource materials to new parents receiving a diagnosis of Down syndrome for their child. These materials are available upon request and through referrals from area hospitals. If you would like to request an Expectant or New Parent Packet, please print and complete this form or contact DSANI at 260-471-9964 or dsani4u@aol.com

Some of the materials in the packet include:

"A Baby First..." This pamphlet is an introduction to some of the issues a parent faces after the initial diagnosis, and stresses the most important fact that this baby is a baby first. (Can also be ordered at: http://www.nads.org/pages/pnp.htm)
"Nursing Your Baby with Down Syndrome" This booklet explains how this can effect breastfeeding, and gives suggestions on positions, techniques, and aids that may be useful. (Can also be ordered in bulk at: http://www.childbirthgraphics.com/)
Woodbine House catalog of books on Down syndrome A publishing house for books on disabilities for parents, children, and professionals. http://www.woodbinehouse.com/Down-Syndrome.29.0.0.2.htm
"First Steps Early Intervention Services: Here ís How to Get Help" A brochure from the Family & Social Services Administration (FSSA) to help families in Indiana get the help that is available to them for a child that is developmentally delayed or disabled. (More information on: http://www.state.in.us/fssa/first_step)
"Parenting a Child with Special Needs: A Guide to Reading and Resources" A publication from NICHCY (National Dissemination Center for Children with Disabilities) that deals with the emotions and impact of raising a child with a disability. It deals with the parents need for information and gives suggestions for potential resources to support the family. (Can be downloaded at: http://www.nichcy.org/pubs/newsdig/nd20.pdf)

Prenatal Testing

The decision whether or not to test for Down syndrome during pregnancy involves many issues: What is the likelihood that my baby will have Down syndrome? What are the risks of testing to me and my baby? What are the benefits, if any, to testing?

Down Syndrome: Health Issues by Len Leshin, M.D., F.A.A.P.
Explains prenatal screening and diagnostic tests offered, and some of the risks and interpretation of the results.
http://www.ds-health.com/prenatal.htm

"Light at the End of the Tunnel"
This booklet is a collection of excerpts from a survey of parents that received a prenatal diagnosis. (Can also be downloaded at: http://www.dsaoc.org/programs/tunnelEnglish.pdf)

Risk and Recurrence Risk of Down Syndrome
Statistical occurrence and variations on Down syndrome.
http://nas.com/downsyn/benke.html

We recommend the following websites for additional information on new parenting issues:

American Academy of Family Physicians: Primary Care of Infants and Young Children with Down Syndrome
Special issues and the rate of occurence of these issues in children with Ds in the early stages of development.
http://www.aafp.org/afp/990115ap/381.html

Downís Syndrome Association (UK)
http://www.downs-syndrome.org.uk/DSA_NewParents.aspx

familydoctor.org
http://familydoctor.org/339.xml

What to Say (Speech) by Sandra Assimotos-McElwee
Addresses the do's and don'ts of what to say to parents of a child diagnosed (pre- or postnatally) with Down syndrome.
http://leeworks.net/DDS/speech.html

Canadian Down Syndrome Society: From Grief to Growth
Addresses the emotions that a parent faces after learning of the diagnosis of Ds. http://www.cdss.ca/Newsletter%20Articles/family%20and%20parenting/1992volSpring6-8.htm

Australian Breastfeeding Association: Breastfeeding a baby with Down Syndrome
Along with reiterating the benefits of nursing, this article offers tips to overcome unique issues associated with breastfeeding your baby.
http://www.breastfeeding.asn.au/bfinfo/down.html

Toilet training is a challenging issue with any child and different techniques work with different children. We offer two different ideas and recommend that you tailor them according to your childís personality.
Interesting article that will help in toilet training, this is in microsoft word format Toilet Training article