Etiology Specific Deafblind Information Links
There are many different reasons that child may be Deafblind. Using the data collected by the National Deafblind Consortium, links have been provided to several of the top genetic conditions that are known to cause Deafblindness. Please feel free to contact the SESA Deafblind specialist for questions about other possible genetic conditions.
CHARGE Syndrome https://www.chargesyndrome.org/
CHARGE syndrome is a recognizable genetic syndrome with known pattern of features. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. Babies with CHARGE syndrome are often born with life-threatening birth defects. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems that delay their development and communication. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.
Usher Syndrome https://www.usher-syndrome.org/
Usher syndrome is a condition characterized by partial or total hearing loss and vision loss that worsens over time. … The loss of vision is caused by an eye disease called retinitis pigmentosa (RP), which affects the layer of light-sensitive tissue at the back of the eye (the retina).
Down Syndrome (Trisomy 21) https://www.ndss.org/
Down syndrome is a chromosomal condition that occurs when an error in cell division results in an extra chromosome 21. Down syndrome can affect a person’s cognitive ability and physical growth, cause mild to moderate developmental issues, and present a higher risk of some health problems.
Stickler Syndrome https://www.marfan.org/stickler-syndrome
Stickler syndrome is a group of hereditary conditions characterized by a distinctive facial appearance, eye abnormalities, hearing loss, and joint problems. These signs and symptoms vary widely among affected individuals. A characteristic feature of Stickler syndrome is a somewhat flattened facial appearance.
Marfan Syndrome https://www.marfan.org/
Marfan syndrome is a heritable condition that affects the connective tissue. The primary purpose of connective tissue is to hold the body together and provide a framework for growth and development. In Marfan syndrome, the connective tissue is defective and does not act as it should. Because connective tissue is found throughout the body, the syndrome can affect many body systems, including the skeleton, eyes, heart and blood vessels, nervous system, skin, and lungs.
Dandy Walker Malformation http://dandy-walker.org/
Symptoms of Dandy-Walker malformation usually appear by age 1. These symptoms may include:
Developmental delays in motor and language skills such as sitting up, walking, and talking
Poor muscle tone, balance, and coordination
Problems with eye movement, mainly jerky eye movement
Vision and hearing impairment
Seizures
Cornelia DeLange Syndrome https://www.cdlsusa.org/
Cornelia de Lange syndrome (CdLS) is a syndrome of multiple congenital anomalies characterized by a distinctive facial appearance, prenatal and postnatal growth deficiency, feeding difficulties, psychomotor delay, behavioral problems, and associated malformations that mainly involve the upper extremities.
Norrie Disease https://www.norriedisease.org/
Norrie disease is a rare X-linked genetic disorder which causes males to be totally blind at birth or become blind in both eyes at a young age. Most males with Norrie disease experience hearing impairment and up to half of males with the disorder also have developmental delays, mental retardation or behavioral abnormalities. Norrie disease runs in families because it is passed down through one of the chromosomes that determines gender (X-chromosome).
Trisomy 18- Edwards Syndrome https://www.trisomy18.org/
Trisomy 18, also known as Edwards syndrome, is a condition which is caused by a error in cell division, known as meiotic disjunction. When this happens, instead of the normal pair, an extra chromosome 18 results (a triple) in the developing baby and disrupts the normal pattern of development in significant ways.
Cri Du Chat Syndrome https://fivepminus.org/
Cri du chat syndrome , also known as 5p- (5p minus) syndrome or cat cry syndrome, is a genetic condition present from birth that is caused by the deletion of genetic material on the small arm (the p arm) of chromosome 5. Infants with this condition often have a high-pitched cry that sounds like that of a cat.
General Deafblind Information Links
The National Center on Deafblindness is a national technical assistance center funded by the federal department of Education. NCDB works to improve the quality of life for children who are Deafblind.
www.pathstoliteracy.org and http://www.pathstoliteracy.org/blog/category/deafblind
This site is intended to be an online hub for information related to literacy for students who are blind or visually impaired, including those with additional disabilities or deafblindness. It includes original content, as well as links to other sites and resources available on the web.
http://literacy.nationaldb.org/
Are you the parent or teacher of a child with deaf-blindness or multiple disabilities? Are you looking for a community of families and teachers such as yours? Are you a professor or student at a university interested in connecting with others to share resources and strategies around literacy for learners with complex challenges? Are you an administrator looking for ways to improve literacy in your school systems? Then you are in the right place.
Project SPARKLE is a program of individualized learning that enhances the ability of parents of children who are deafblind to fulfill their roles in the development and education of their children. Through Project SPARKLE, parents will have access to information, training, and resources in their homes via DVD technology and the Internet.
Frequently Asked Questions
My child has some vision and some hearing, do they still qualify for your services?
Yes! Most children who are Deafblind are not completely deaf or completely blind. However, people with both vision and hearing loss cannot rely on vision or hearing to effectively compensate for the lack of the other sense.
My child’s vision is fine now, but they have been diagnosed with a progressive loss. What support can you offer?
It is important to start practicing safety and independence skills while you still have vision. For some kids, this means talking about what it might be like when you cannot see as much, and for others it might mean setting up different technology to try so they are familiar with it in the future. SESA specialists are also happy to simply check in with you and your child several times a year and make sure that things are currently stable.
My child has both hearing and vision loss, how can we teach him to communicate with us?
Absolutely! There are many different ways to work on communication and the Deafblind project can help you find a way that works for you and your child. Your child is already communicating with you (I promise, he is!) and there are many strategies that can be used to encourage more communication throughout the day.
My child does not like to wear his hearing aids/glasses. How much should we force it?
As a SESA specialist, I won’t force your child to wear glasses or a hearing aide. Instead, I will work with you and the team to set up a plan that helps the child to want to wear them. It often starts with a small amount of time and then builds up to longer a period of time. Forcing the issue can cause frustration, tantrums and negative behaviors and we want your child to see his hearing aids/glasses as a positive thing.
My child has hearing and vision loss, and is in academic classes. What types of support do they need?
There are many different supports for a child who has both hearing and vision loss and is in an academic setting. Working with the team and the student, SESA can help you find ways to lessen both hearing and visual fatigue, increase concept development and understanding, and learn self-advocacy skills.
I can understand my child do they really need to have an alternate form of communication?
Yes, they do. It can be tempting to let a child rely on the fact that you have learned how to read them, but that can cause a lot of frustration and communication breakdowns. There will be other people in your child’s life- at home, at school, out in the community- and it is important that your child has a way to communicate with those people as well as with you. It can also be frustrating to a child if they are communicating something but you read it as something else- having a more standard way to communicate will help lessen that frustration because you are not having to mind read.
What do you mean by visual fatigue?
Visual fatigue is a common condition that occurs when your eyes get tired from intense use. When you have vision loss your eyes are already working harder to process visual information, and the longer you look at something, the harder they have to work. Visual fatigue can make you tired and reduce your ability to concentrate.
What do you mean by listening fatigue?
Hearing is hard! Just like your legs get sore after a good run and your eyes tire after long periods of reading or watching TV, your ears get worn out listening to sounds and speech. They get tired even faster if you have hearing loss, because your ears work harder to hear, decipher and interpret speech, noise and sound all at once.
What do you mean when you say “hand-under-hand”?
Hand under hand is a way of working with your students- instead of making their hands do something. When you use hand under hand instead of hand over hand, the student has the option of moving their hand closer or taking it away. It is a way of the student learning about new things, getting information or interacting with an activity with support that still allows for autonomy. When you use hand under hand with a student, they have to be present; using hand over hand allows a student to “check out” as you manipulate their hand to do something.
