Family Packet

by NCDB on Dec 28, 2017
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The materials in this packet were selected by state project family engagement coordinators working in collaboration through the Family Engagement Initiative as the Birth - 3 Work Group.  The materials are meant to provide families new to deaf-blindness with information that will help them understand more about their child and the services and resources available to support them. 

Begin With a Letter

This letter (developed in September 2017) can be sent to families of infants who have been recently referred to your project. It includes a 2-page sheet of basic tips and resources for new families. It is designed to be customized by each project, so make sure to replace all text in square brackets with your project-specific information.

Additional Resources

These resources were selected by the Work Group as key items to share with families. They can be sent with the welcome letter above or shared later, depending on the families' needs and interests.

Project Brochure

I Wish I Had...Wisdom From Parents of Children Who Are Deaf-Blind
This family-friendly document, compiled by NCDB, presents parents' thoughts and insights along with a number of photos.  
Also available in Spanish

10 Tips from the Parenting Trenches

A one-pager from California Deafblind Services. Also available in Spanish.

Infant Massage for Babies with Sensory Impairments
A brief overview from California Deafblind Services. If family members are unfamiliar with infant massage, state project staff may want to demonstrate or explain specific techniques during a home visit in addition to providing this handout. Also available in Spanish.  

HomeTalk: A Family Assessment of Children Who Are Deafblind

An assessment tool designed to help family members participate in the planning of their child’s educational program. Project staff will probably want to use this with the family during a home visit rather than sending it as part of a packet. Also available in Spanish.

Strategies for Parents to Use in Developing a Foundation for Literacy
A nicely designed, 12-page booklet from the Ohio Center for Deafblind Education published in 2017.

Hold Everything! Twenty “Stay-Put” Play Spaces for Infants and Preschoolers with Sensory Impairments and Other Special Needs
A 45-page booklet developed by the Ohio Center for Deafblind Education. It presents detailed instructions and a photo for each play space.

Developing Concepts with Children Who Are Deaf-Blind
An 8 page NCDB factsheet. Also available in Spanish, Chinese, and Vietnamese

Active Learning Space Mailing List
Families can sign up for email  updates from this site (run by Penrickton Center, TSBVI, and Perkins) which provides a wealth of information about Lilli Nielsen's Active Learning approach.

CHARGE Syndrome Foundation
A nonprofit organization that works to improve the lives of people with CHARGE syndrome through outreach, education, and research. It supports families via a director of outreach, a weekly tele-support group, extensive online resources, and an international conference every two years.

Usher Syndrome Coalition
An advocacy and support organization for people with Usher syndrome and their families.

For Families With a New Baby

Early Interactions With Children Who Are Deaf-Blind   In Spanish
The Importance of Touch in Parent-Infant Bonding   In Spanish

Tips for Working with Families 

This document is intended for Family Engagement Coordinators and any other state project staff who work with families.

Download the tipsheet.

NCDB : The Research Institute : Western Oregon University : 345 N. Monmouth Ave. : Monmouth, OR 97361
Contact Us: 800-438-9376 |

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