Resources

National and State of Texas

Helpful Websites

AFB Family Connect
You'll find videos, personal stories, events, announcements, and an online community to help you guide your child to the life he or she wants.
http://www.familyconnect.org/parentsitehome.asp

DARS Deafblind Services
Link to the DARS website and the DB Services page. This is where the 3 Deafblind Specialists can be contacted.
http://www.dars.state.tx.us/dbs/deafblind.shtml

DB-MD Medicaid Waiver Handbook
This describes the services & structure of the waiver. It can help you in discussing a person's plan of care.
http://www.dads.state.tx.us/handbooks/dbmd/

DBMAT – DeafBlind Multihandicapped Association of Texas
http://dbmat-tx.org

ESC Deaf and Hard of Hearing Specialist & Reg. Day Schools f/t Deaf
List of contacts
http://portal.esc20.net/portal/page/portal/esc20public/DeafEdMENU/StatewideDHHDirectory.pdf

For New Parents - You and Your Baby
This is the document DB Link has done for new parents....great resources and information!
http://www.tr.wou.edu/dblink/baby.htm

Helen Keller National Center (HKNC)
This is the national organization committed to serving adults who are deaf-blind. The HKNC Mission is to enable each person who is deaf-blind to live and work in their community of choice.
http://hknc.org

It's a New Idea- Parent Manual for TX Special Ed Services
Excellent resource to support families trying to understand the TX Special Education system. Available in Spanish and English. Created by the ARC of Tx and Advocacy Inc.
http://www.thearcoftexas.org/resources/families/inclusionresources.asp#newidea

National Consortium on Deaf-Blindness
This is a national website specific to deafblindness. It would be helpful for families to be shown the For Families page, which includes wonderful resources such as "I wish I had...". DB-Link is another great resource for finding articles on specific topics,
http://www.nationaldb.org

Ohio Center for Deafblind Education
Twenty "Stay-Put" play spaces for infants, preschoolers and developmentally young children with sensory impairments and other special needs.
http://ohiodeafblind.org/assets/files/files/milestone_packets/0_2/hold_everything.pdf

Paths To Literacy
Paths to Literacy is an online hub for information related to literacy for students who are blind or visually impaired, including those with additional disabilities or deafblindness.
http://www.pathstoliteracy.org/

Pop-Up IEP
Assistance for IEP meetings. Click on the possible administrative conversation stopper to find a response to get the IEP meeting moving in a positive direction.
http://nclid.unco.edu/nclid/ssn/index.php

Resource Guide- Tx . Parent to Parent
Provides local, regional, and state resources that families might need
http://www.txp2p.org/parentserv/parentmatch.htm

Special Education Training by Partners in Policy Making (PIPM)
This is good training with a bias. The important lesson is how to work the Special Ed system. Readers should know that the philosophy of PIPM is slanted towards inclusion for all. This may not be the best for deafblind students.
http://www.partnersinpolicymaking.com/education/

TX Deafblind Project Unique Educational Needs of Children With Deafblindness
THis is a section from TSBVI Outreach materials on interveners
http://www.tsbvi.edu/Outreach/deafblind/intervener.htm#needs

Texas School for the Blind & Visually Impaired
This website has information about the various programs offered through TSBVI, including Outreach. It also has the Texas SenseAbilities publication and a current calendar of trainings available throughout Texas.
http://www.tsbvi.edu

Understanding Family Support
A very large brochure describing many resources in Texas for families of children with disabilities. Save this to your hard drive or print it.
http://uap.edb.utexas.edu/documents/ut_tcds_family.pdf

Wonder Baby
Site dedicated to helping parents of young children with visual impairments as well as children with multiple disabilities.
http://www.wonderbaby.org

To find support or to share with a grieving family

The Compassionate Friends
http://www.compassionatefriends.org

Bereaved Parents of the USA
http://www.bereavedparentsofusa.org

Recommended Reading

Understanding the syndromes, medical complications, and the systems that exist to provide support is the bare minimum expectation of parents with chronically ill children. In order to communicate with medical providers, friends, family, and most importantly with your child we had to immerse ourselves in books and web sites.

We also have personal favorites that we believe helped us achieve balance and at some point will add our personal reading favorites to the site. There is never enough time in a day to read ...but when your child's life is on the line its amazing what you can do. So we challenge parents and medical professionals to continue to educate themselves and develop a firm foundational understanding of CHARGE and its complexities.

The following list is not all inclusive and is simply a listing of the books we found most useful for our particular journey. We welcome suggestions and other resources from you.

CHARGE SYNDROME: A Management Manual for Parents

CHARGE Syndrome Foundation

CHARGE SYNDROME – A Volume in the Genetics and Communication Disorders Series   (Harthstone, Hefner, Davenport and Thelin) ©2011

Deaf-Blind Infants and Children: A Developmental Guide (McInnes and Treffry) ©1982

Teaching Children who are Deaf-Blind – Contact Communication and Learning (Aitken, Buultjens, Clark, Eyre and Pease) ©2000

A Guide to Planning and Support for Individuals who are DeafBlind  - Edited by John McInnes  ©1999

In the future we will have a link to purchase these books from Amazon directly from our web site. So stay tuned.

Therapy

Early Childhood Intervention
Contact your local state and region representatives
** Once enrolled children can receive the following services:

  • Developmental Services
  • Occupational Therapy
  • Physical Therapy
  • Speech and Language Therapy
  • Family Counseling
  • Nutrition Services
  • Vision and Hearing Services