Find out how many children in your state are deaf-blind?

Boston Herald Article on Helen Keller

"On the 125th anniversary of the woman whose indomitable spirit inspired the world, let us rededicate ourselves to those who must overcome challenges everyday, just as Helen Keller did."
Steven Rothstein, President, Perkins School for the Blind.

Independence Day: Our Story

Andy was sitting at his computer as we left, absorbed in an internet conversation with his California buddies. He might have been describing his new digs. Maybe he was telling them about the fireworks he was going to see that night. Ironically, this was the 4th of July weekend, our Independence Day Holiday. Andy turned to wave a quick goodbye as we closed his apartment door. He never was much at multi-tasking. More... ( from ChargeSyndrome.org)

Katie's Blog

Leslie, Arlin & Katie Kauffman live in Mason, Ohio. Katie was born on January 17, 2002, with CHARGE Syndrome, a rare genetic condition that affects hearing, sight, balance, feeding, sleep, the heart, and many other functions. Katie has had eight surgeries to date, as well as countless doctor and therapy visits. Her family invites you to follow their Blog. Comments are welcome.

Deaf-Blind Awareness Week Article - By Michele Westmaas

CHARGE syndrome is becoming one of the leading causes of congenital deaf-blindness. Consider this. At its worst, CHARGE strips a child of all senses. Vision, hearing, and balance can be absent due to malformations of the eye and any or all parts of the inner and middle ear. Taste can be eliminated due to prohibition of oral feeding caused by swallowing problems, severe gastro-esophageal reflux, and aspiration pneumonias. Smell can be absent due to problems with the olfactory nerve. Touch can be reduced due to severe sensory defensiveness and integration issues. More... (MSWord).

Kara's Story

Kara is a third grader with limited vision and hearing impairment. She has been working at grade level until this year. Kara has CHARGE Syndrome, which has become a leading cause of deafblindness in the last decade. With magnification she can read regular print; with a sound-field FM amplification system (FM unit), she can hear the teacher’s voice, however Kara still misses a lot of information. She is unable to see details like facial expressions and body language and does not hear conversations that occur beyond her FM unit. Children with typical hearing and vision gather vast amounts of information casually through these senses. Kara misses most of this casual information gathering and is in danger of falling behind.

Heather's Story

Heather is a first grader who is deafblind. Heather has CHARGE Syndrome, which has become a leading cause of deafblindness in the last decade. Heather was a very medically fragile infant who endured multiple surgeries (cardiac repair, choanal atresia repair, placement of a G-tube, etc). Heather's early years were very stressful for both her and her family. Frequent pneumonias and other health issues required hospitalizations, constant disruptions in family life and very little time for Heather to learn and grow, and just be a child. Like many youngsters diagnosed with CHARGE, once she got beyond that fragile period Heather's health improved greatly. Fortunately, with lots of support, her family was able to stay in tact as well. They acknowledge that raising Heather is a challenge but they wouldn't have it any other way.

Heather reached all of her developmental milestones, but she reached them much later than her siblings. Balance problems hindered her efforts to walk, swallowing problems created feeding issues, and toilet training is still a significant problem.

Heather received early intervention services when she was healthy enough but still started preschool with significant gaps and developmental delays, a very common occurrence for children with significant medical issues. But Heather also has hearing and vision impairments and these created huge barriers to Heather's ability to communicate. Fortunately, Heather's sensory losses were recognized early and she was referred to her state's deafblind project. The state deafblind project offers training and support to educational teams.

The project personnel provided a series of in-service training for educational teams to develop their knowledge and skills in effective practices, such as discovering and understanding the learner's ways and reasons of communicating and interacting with others; the need for real-life learning experiences and involving the learner in the total process; using a conversational approach and understanding and using a calendar and/or schedule system.

Heather's team learned that , like all children, the learner with deafblindness learns by doing. Heather needed to be given thoughtful access to people, things, and environments that happen moment by moment. For each interaction throughout her day consideration must be given to the visual, motor, and auditory properties of the interaction. Other important practices shared with her team were placement of objects and educational materials and the respectful awareness that Heather's hands were her eyes.

Heather is making good progress. She is using object and pictures to communicate and is even responding to some signs. Several of her classmates have become skilled communicators and good pals. Heather is an active and engaged member of her class.

Today, more than any other time in the history of education, learners who are deafblind are being educated in their home schools with their same-age peers. The pool of qualified teachers, assistants, paraprofessionals and interveners is small. More than ever before, there is a need to provide local education programs with the information, training, and technical assistance required to serve learners who are deafblind in their home schools. Inclusion is not just a place in a classroom; it is a quality program rich in communication opportunities. The state and national deafblind technical assistance projects play a vital role in providing this service.

Kelly and Sam's Story

Kelly is an intervener who received special training about communication and choice making through her state's deafblind project. Kelly works with Sam, a young boy who is hearing impaired and has very little usable vision. Young Sam started kindergarten in August. Kelly is in attendance with him for a portion of each week. One afternoon, Sam began showing signs of distress that quickly escalated. After trying to interest the child in a number of choices, Kelly decided to try something. She took two objects that had been chosen for his communication system, the piece of sheepskin representing "home" and the wooden block relating to "school". Kelly handed Sam each object and, after repeating the process for assurance, determined that the boy wanted to return home. As it turned out, Sam was getting a cold. His mom was now sure that the new communication system gave Sam a meaningful way to communicate his feelings and needs to others.