When new parents receive a diagnosis of Down Syndrome for their new little one, their level of dedication may be particularly "special". At the same time, the rewards for the family could be exceptional as the child will become capable of giving much love and affection. She will also be able to celebrate with her parents as she learns important skills and reaches significant milestones along the way.
For the best possible outcomes, the parents and families of children with Down Syndrome will need all the help, support and resources available in their communities. This week, as we approach World Down Syndrome Awareness Day (Thurs., March 21), our blog article is dedicated to these families, providing this needed information to help them best care for their children, especially in the areas of health care, vision and literacy.
Options for Health Care
For optimal health care of their child, families may wish to locate a developmental pediatrician, a specialist knowledgeable about Down syndrome or a Down syndrome clinic. A pediatric hospital can guide you in this search for such a specialist as well as provide you with a support team of other medical professionals to help you and your child. These specialists can work with your primary care physician. However, it is not always necessary or possible to find an expert on Down syndrome. The most important thing is that the doctor is willing to learn about the condition and collaborate with the family and individual with Down syndrome (also called Trisomy 21).
(Source: National Down Syndrome Society: https://www.ndss.org/Resources/Health-Care/Health-Care-Providers/.)
In addition, local parent groups can also be an excellent resource for learning of health care professionals who have experience with Down syndrome.
To enable parents to care for and help their child with Down Syndrome in the best ways possible, we have gathered together this week a collection of resources to help support these families in the best ways possible.
Vision and Literacy
Also, parents will want to know that Down syndrome can affect the developing eye, which could impact the proper development of vision. Eye disease is reported in over half of patients with Down Syndrome, from less severe problems such as tear duct abnormalities to vision threatening diagnoses, such as early age cataracts.
(Source: National Down Syndrome Society: http://www.ndss.org/Resources/Health-Care/Associated-Conditions/Vision--Down-Syndrome/.)
As particular this attention should be given to vision in people with Down syndrome, we have also included in our resources list below here a group of links related to vision and literacy for parents of children with DS who are challenged with such issues. Please scroll down to see Vision & Literacy Resources for Down Syndrome in the second half of the list to follow here. We hope that these will provide a starting point in the development of reading skills for these children.
Resources for General Information about Down Syndrome
List of Down Syndrome Resources
List includes national organizations, medical resources & more
http://www.downsyn.com/resources.php
National Association for Down Syndrome (NADS)
Organization that offers a special welcome to new parents. Since its inception in 1961, NADS has always believed that parents helping parents is a very powerful concept and most parents find that some of their greatest resources are other parents. NADS is funded by private and corporate donations, fundraising events and by membership dues.
http://www.nads.org/
Health Care Providers and Locator Map
From the National Down Syndrome Society (NDSS)
For optimal health care, families may wish to locate a developmental pediatrician, a specialist knowledgeable about Down syndrome or a Down syndrome clinic. These specialists can work with the primary care physician. Local parent groups are also an excellent resource for learning of health care professionals who have experience with Down syndrome. (Please see NDSS Affiliate Local Support with Locator Map to follow.)
https://www.ndss.org/Resources/Health-Care/Health-Care-Providers/
Affiliate Local Support with Locator Map
From the National Down Syndrome Society (NDSS)
Local parent groups are an excellent resource for learning of health care professionals who have experience with Down syndrome.
https://www.ndss.org/Resources/Local-Support/
University of Michigan Health System Website
General overview of Down Syndrome (Trisomy 21) with basic statistics, information about development and more.
http://www.med.umich.edu/yourchild/topics/downsyn.htm
Down Syndrome Education Online
Website offers a comprehensive, reliable and up-to-date range of information, resources and services for families, practitioners and researchers caring for, supporting and investigating Down syndrome.
http://www.down-syndrome.org/guide/
Down Syndrome Blog
Blog written by the father of a son with Down Syndrome. An EXCELLENT read with regular posts!
http://noahsdad.com/
List of Other Down Syndrome Blogs
http://noahsdad.com/down-syndrome-blogs/
Vision & Literacy Resources for Down Syndrome
Vision and Down Syndrome
Information on how vision may be impacted by Down Syndrome and resources to help
http://www.ndss.org/Resources/Health-Care/Associated-Conditions/Vision--Down-Syndrome/
Reading Interventions for Children with Down Syndrome
by Kelly Burgoyne
Research with typically developing children has identified successful methods of teaching reading, and recent work has begun to evaluate these methods for individuals with Down syndrome. The aim of this paper is to review this work, and to highlight areas in need of further research.
http://www.down-syndrome.org/reviews/2128/reviews-2128.pdf
Tools for Challenged Readers
Brennan Innovators, LLC provides customizable Reading Focus Cards (Patent 7,565,759) for struggling readers of all ages. The company can create special Reading Focus Cards for children and adults who require large fonts (1 to 2 inches in size) for vision issues. Those interested are invited to call the company for specification needs and individual pricing (see website for phone number, please).
www.FocusandRead.com/products
Desktop APP---Reading Focus Cards (Patent 8,360,779)
This desktop app for Macs, Windows PCs & Microsoft Surface tablets accommodates low vision or unfocused readers by covering text NOT to be read and channeling the eyes to 1 or more lines of text that ARE to be read. Users can manipulate all features of this digital tool available for download. This app allows for customization to meet the needs of individual readers and can also accommodate very large text or fonts as needed.
To learn more, visit http://www.focusandread.com/page/488513590.
Direct links to access app download:
1. For Macs (desktops & notebooks):
Visit the Mac App Store and search for Reading Focus Cards or go directly to
https://itunes.apple.com/us/app/read-and-focus/id920617853?mt=12
2. For Windows PCs (desktops & laptops):
Visit Gumroad at https://gumroad.com/l/ReadingFocusCards OR visit the Microsoft Windows Store and search for the app called Reading Focus Cards. (No URLs are ever provided for apps in the Windows Store.)
Emergent Literacy in the Homes of Children with Down Syndrome
by Thomas L. Layton, Ph.D., North Carolina Central University
http://triangledownsyndrome.org/cmsmadesimple/index.php?page=literacy
Reading and writing for individuals with Down syndrome - An overview
by Sue Buckley
http://www.down-syndrome.org/information/reading/overview/
The influence of reading instruction on language and memory development in children with Down syndrome
by Glynis Laws, Sue Buckley, John MacDonald and Irene Broadley
This paper reports evidence for the importance of reading instruction for memory and language development in children with Down syndrome.
http://www.down-syndrome.org/reports/52/
For information on customizable reading tools:
www.FocusandRead.com Tools for struggling readers of all ages!
www.BrennanInnovators.com Info & support for struggling readers
314-892-3897
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