Low Incidence Disabilities and

Syndromes

Lindsay JohnsonJuly 21, 2014

Most common condition that can affect both a person’s hearing and vision

Major symptoms are:

• Hearing Loss• Retinitis Pigmentosa (RP)• Causes night-blindness and a loss of peripheral vision• Progressive degeneration of the retina• As the RP Progresses the field of vision narrows

Usher Syndrome

Approximately 6-12% of children who are deaf or

hard-of hearing have Usher Syndrome. It is a autosomal-recessive disorder that a child

inherits when both parents have or carry the gene.

Usher Syndrome

There is a 25% chance a child will be unaffacted25% chance a child will have the disorder50% chance the child will be a carrier

Usher SyndromeThree Types

Usher Syndrome

The retina on the left is a person with Usher Syndrome compared to the retina on the right of a normal retina.

Child should sit where they are more comfortable can see:• The chalkboard• The teacher• Other Students• Sit in front of a window, not

behind it

When a teacher is talking, they should stand in front of the

window

Modifications for Usher Syndrome

• Keep clean of clutter, unnecessary drawers

or doors open. • Inform student if the room should change at

any time

Keep the format of the

room the same

• Non glare paper• Whiteboard, use dark colors. Chalkboard use

light colors avoid yellows because it is hard to see

• Experiment with lighting in the room to help the child out.

Pay attention to color

contrasts. Easier to see

for the student.

Modifications Cont.

Print out individual copies for the student to examine on their own. •Graphs, Charts, Maps etc

Time and a half on test

Additional time to complete assignments

Shorten Assignments • limit the number of questions asked

Modifications Cont.

Genetic birth defects that occurs in

one in every 10,000 birth

Extremely complex syndrome that differs in each child

Babies born with CHARGE Syndrome suffer from life-threatening birth defects, including heart defects,

hearing loss, vision loss and balance problems

Charge Syndrome

Charge Syndrome

“CHARGE” Acronym for characteristics

C: Coloboma, Cranial nerves H: Heart Defects A: Atresia of the choanae R: Retardation in growth

and Mental Development G: Genital abnormalities E: Ear malformation and/or

hearing loss 4/6 characteristics must be

present for diagnosis

Children with CHARGE typically suffer from both hearing and

vision loss. Educators should use:

• Total Communication• Gestures, print/braille, symbols, PECS, Facial expression,

simple signs etc.• Make sure all activities have a clear beginning, middle and

end and are at their level of understanding• Sensory Breaks

• Quiet room with low lighting• Bean bag chair• Books and magazines• Weighted vests or blankets

Modifications

Children with CHARGE Syndrome are often

underestimated. They are clever children that need to be challenged to grow and flourish in the classroom.

Techniques teachers can use to assist and motivate the

child:

Hang up their work Intriguing material in the classroom Rotate material Be as creative as possible

Modifications

• Organizational Skills• Negotiation techniques• Let the child feel in control

• Sharing• Peer-to-peer interactions

• Motivation• Choose activities that the child will find interesting

• People Preferences• Choose who to work with

• Modeling• Choices• Gives the child a sense that they are in control

Structuring

activities

Modifications

• Touch when signaling that someone is

talking or signing• Hand Over/Under Hand• Sensory Breaks

• Short break between activities and during long activities

• Signals: Verbal/Auditory/Visual• Gesture to gain their attention• Tap to signal that you want their

attention• Speak softly

Sensory Technique

s

Modifications

Down Syndrome

A genetic condition when a baby is born with 47 chromosomes instead of 46

People with Down syndrome are widely noticeable due to their facial appearance

Create a planning matrix to show how goals will be worked on throughout the student’s day.• A chart can be created to show the specifics of the matrix. • At lunch they will learn about handling money• Communication will be in the afternoon with peers• Reading will be in the morning, one-on-one with an aide

Modifications

Keep the classroom

interesting, showcase the student’s work to

promote student motivation

Make connections as much as possible and

allow time for the student to apply their

new knowledge. Repetition is key

Contain the noise level in the classroom

Allow the student to work one-on-one or in

small groups

Modifications

Have the student sit in the front

of the classroom

Remove distractions

Speak directly to the student and/or use signs, gestures,

expressions and lights to get their attention

Visual Aids

Larger Font

Use simple directions, break items down into smaller chunks

Modifications

Usher

SyndromeDual sensory impairment of hearing and

vision loss

Characteristics also include balance, motor and language development and

intellect delays

Genetic syndrome

Hearing loss as early as 6 months, but child is diagnosed with Usher later on in

childhood

Life Expectancy is normal

Intelligence range is normal-high

CHARGE Syndrome

Has symptoms of loss of hearing and vision loss

Characteristics also include balance, motor and language development and

intellect delays

Genetic Abnormality

Diagnosed at birth, distinct facial features

Highest mortality rate during the child’s first 3 years due to seriousness of condition. Long Term: un known

Intelligence major learning disabilities-normal

Down Syndrome

Recent findings have been discovered showing people with hearing and vision

loss

Besides physical characteristics, 50% of children are born with heart defects and

thyroid disease

Genetic (Chromosomal) Syndrome

Can be diagnosed during prenatal care of mother or at birth

With treatment for health conditions, people can live a long and healthy life

Often suffer cognitive delays/mental retardation

Comparison

Motivation

Hand over/under hand Guidance

Touch Cues

Sit the student closest to the chalkboard and teacher

Extended time and a half on tests

Shorten assignments

Work one-on-one or in small groups

Modifications in Common

Bar-Tzur, D. (2008, June 23). Interpreting and working with Deaf-Blind

people. Retrieved 07 20, 2014, from http://theinterpretersfriend.org/pd/ws/db/text.html

Cleveland Clinic. (1995-2014). Diseases & Conditions. Retrieved 07 19, 2014, from Cleveland Clinic: http://my.clevelandclinic.org/disorders/usher_syndrome/hic_usher_syndrome.aspx

Daniel P. Hallahan, J. M. (2009). Exceptional Learners An Introduction to Special Education. Boston: Pearson.

J., D. (2012). Development and characteristics of children with Usher syndrome and CHARGE syndrome. Retrieved 07 20, 214, from PubMed: http://www.ncbi.nlm.nih.gov/pubmed/22721527

Martha M. Majors, M. a. (2008, March). Educational Needs of Children with CHARGE Syndrome. Retrieved 07 18, 2014, from Charge Syndrome: http://chargesyndrome.org/professional%20packet/11%20educational%20needs.pdf

Bibliography

Meg Hefner, M. (1999). Diagnosis, Genetics and Prenatal

Diagnosis in Charge. Retrieved 07 19, 2014, from http://chargesyndrome.org/manual/Diagnosis.pdf

Molly McLaughlin OTR/L, M. (n.d.). Effectuve Strategues for Home and School for the Student with Usher Syndrome. Retrieved 07 19, 2014, from http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=0CCEQFjAA&url=http%3A%2F%2Fwww.nmsd.k12.nm.us%2Foutreach%2Fdocuments%2FEffectiveDeaf-blindStrategiesforHomeandSchool.ppt&ei=YzTJU-zVCoeGyATj-4G4Cw&usg=AFQjCNHLhk_xKaWJBc-KnQSZxKZnMbXnGQ&si

Moss, K. (2002, 07 30). Syndromes Which Often Result in Combined Vision and Hearing Loss. Retrieved 07 19, 2014, from SEE/HEAR: http://www.tsbvi.edu/seehear/archive/syndromes.html

Bibliography Cont.

National Down Syndrome Society. (2012). Down Syndrome Facts.

Retrieved 07 20, 2014, from The National Advocate for People with Down Syndrome Since 1979: http://www.ndss.org/Down-Syndrome/Down-Syndrome-Facts/

National Institute on Deafness and Other Communication Disorders. (2014, April 30). Usher Syndrome. Retrieved 07 18, 2014, from National Institute on Deafness and Other Communication Disorders (NIDCD): http://www.nidcd.nih.gov/health/hearing/pages/usher.aspx

Radek, A. &. (2009-2013). Alicja. Retrieved 07 19, 2014, from Alicja: http://www.alicja.org/

WebMD. (2014). Children's Heath Understanding Down Syndrome--the Basics. Retrieved 07 20, 2014, from WebMD: http://www.webmd.com/children/guide/understanding-down-syndrome-basics

Bibliography Cont.