Getting in
Touch - Helpful Resources
Nutritional Therapy
NuTriVene-D™
Targeted nutritional intervention products for individuals with Down syndrome, infants through adults, are available via mail order through International Nutrition, Inc. Nutritional supplements along with Piracetam can be ordered over the phone and on the web.
International Nutrition, Inc.
11615 Crossroads Circle, Ste. D
Middle River, MD 21220
phone: (800) 899-3413
fax: (866) 902-1767
ask@nutrivene.com
www.Nutrivene.com
"School" for our Babies
Early Intervention/Physical &
Occupational Therapy
Early intervention programs are guaranteed by federal law for our babies with Down syndrome. The programs are overseen by the U.S. Department of Education, Office of Special Education and serve infants and toddlers (birth thru 3 years old) with special needs. Physical therapists, occupational therapists, speech and hearing specialists offer their services through early intervention programs which are available in most communities in the United States. Many early intervention therapists can come to you in your home (this can be especially helpful when your baby is a newborn). The early intervention programs are based on federal law (Individuals with Disabilities Education Act – IDEA) and most services are provided at no cost.
To find out what and where the early intervention programs are in your community (specifically ask for programs "for infants and toddlers with disabilities"), contact:
The National Dissemination Center for
Children with Disabilities (NICHCY)
P.O. Box 1492
Washington, D.C. 20013-1492
telephone: (800) 695-0285
fax: (202) 884-8441
nichcy@aed.org
www.nichcy.org/states.htm
The National Association for
Child Development
An organization offering a family-centered, home-based approach to education. NACD designs specific home educational and therapeutic programs for infants, children, and adults with special needs, including Down syndrome.
The National Association for Child
Development
549 25th St.
Ogden, UT 84401
telephone: (801) 621-8606
fax: (801) 621-8389
info@nacd.org
www.nacd.org
Easter Seal Society
An organization dedicated to providing therapies (recreational, occupational, speech and language therapy, etc.) for children with disabilities and their families.
Easter Seals National Office
230 W. Monroe St. #1800
Chicago, IL 60606
telephone: (312) 726-6200
www.easter-seals.org
The Easter Seal Society has affiliates in each state, Washington, D.C. and Puerto Rico. Check your phone listings in the Business White Pages for the center nearest you.
Support and Advocacy
When you are brand new to something, anything really, from moving to a new town to being a Mom or Dad for the first time to being a Mom or Dad of a baby with special needs, connecting with others who have experience and knowledge is tremendously comforting and helpful. Knowing others have been there and are eager to reach out to the "new kid on the block" is wonderful. For everyone involved. Help, experience, comfort are right at your fingertips - a phone call, a mouse click away, maybe even a walk or short drive away.
More than likely a Down syndrome support group exists in your community or a community nearby. Unfortunately, there isn’t a surefire "national" clearinghouse for such groups, so you will have to ask around, dig a little. Ask the hospital social worker, your baby’s pediatrician, the local ARC office, early intervention personnel, or special education teachers in the public school.
A mouse click away are parent support groups and various national groups all with easily accessed websites.
The Riverbend Down Syndrome
Parent support Group
This parent support group has gone "on-line," so if you have access to a computer (at home, at work, at the local library) you can "join" this group based in southwestern Illinois no matter where you are. This group provides a gold mine of information on many topics relating to Down syndrome.
www.altonweb.com/cs/downsyndrome/
The ARC of the United States
The ARC is an organization which provides information, support, and an advocate (if requested) to families who have children with special needs. There are chapters in each state.
The ARC of the United States
National Headquarters
1010 Wayne Avenue, Ste. 650
Silver Spring, MD 20910
telephone: (800) 433-5255
fax: (301) 565-3843
info@thearc.org
www.thearc.org
National Down Syndrome Society
This widely-known national organization provides information about education, research and advocacy that benefit people with Down syndrome and their families. NDSS is also the sponsoring organization for Buddy Walks held in hundreds of locations around the country.
National Down Syndrome Society
666 Broadway
New York, New York 10012
telephone: (800) 221-4602
fax: (212) 979-2873
info@ndss.org
www.ndss.org
Down Syndrome Research
Dr. Lawrence Leichtman
Dr. Leichtman is a physician who has cared for hundreds of Down syndrome patients and is currently conducting research on targeted nutritional intervention.
Genetics and Disabilities Diagnostic Care
Center
P.O. Box 4548
Virginia Beach, Virginia 23454
telephone: (757) 425-1969
fax: (757) 425-1822
larry@lleichtman.org
www.lleichtman.org
Stanford School of Medicine
Center for Research and Treatment of Down Syndrome
Studies underway at the Stanford School of Medicine are leading to therapies to improve cognition in children and adults with Down syndrome. The results of these studies may serve double duty in improving cognition for those suffering from Alzheimer’s disease.
Stanford University School of Medicine
300 Pasteur Drive
Stanford, CA 94305
telephone: (650) 723-4000
dsresearch@med.stanford.edu
http://dsresearch.stanford.edu
Helpful books
Topics in Down Syndrome – Gross Motor Skills in children
with Down Syndrome – A Guide for Parent and Professionals
by Patricia C. Winders, P.T.
Published by Woodbine House, Inc., 1997, 392 pages
This hands-on book covers:
1. what skills are appropriate for each
stage of
development, from birth through age six;
2. how the skills are broken down into their
component steps;
3. detailed instructions for activities for practicing each step;
4. guidelines to tips for doing the activities
Topics in Down Syndrome – Communication Skills in
Children with Down Syndrome – A Guide for Parents
by Libby Kumin, Ph.D., CCC-SLP
Published by Woodbine House, Inc., 1994, 256 pages
Parents learn what to expect as communication skills progress from infancy through early adolescence, how Down syndrome can affect those skills, and what they can do to help maximize their child’s potential in this crucial area of development.