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Effective Strategies for Home and School for the Student with Usher Syndrome

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Effective Strategies for Home and School for the Student with Usher Syndrome – PowerPoint PPT presentation

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Title: Effective Strategies for Home and School for the Student with Usher Syndrome


1
Effective Strategies for Home and School for the
Student with Usher Syndrome
  • Molly McLaughlin OTR/L, M.A.
  • Project for NM Children and Youth who are
    Deaf-blind
  • UNM Center for Development and Disability

2
Usher Syndrome Overview
  • Usher syndrome- defined as hearing loss and an
    eye disorder called retinitis pigmentosa, or RP.
  • Inherited recessive genetic disorder- must get
    the gene from both parents. 1-4 chance of having
    a child with US if both parents carry the gene
  • About 25,000 people in the U.S. are affected by
    (US)
  • Estimated that 3-6 of the deaf/hh population
    have US
  • Usually leads to legal, if not complete blindness
    from RP
  • At least three types exist (Type l, ll, and lll)

3
Retinitis Pigmentosa RP
  • RP causes night-blindness and a loss of
    peripheral vision (side vision) through the
    progressive degeneration of the retina.
  • RP may be diagnosed at any age and can lead to
    complete blindness
  • RP affects the photoreceptor cells (rods and
    cones) in the retina. These cells gradually
    deteriorate and die.
  • Rods help us see in dim light and at night
  • Cones help us with our day vision, seeing fine
    details and color

4
RP-continued
  • As RP progresses, the field of vision narrowsa
    condition known as tunnel vision -until only
    central vision (the ability to see straight
    ahead) remains.
  • With RP the rods deteriorate first- first symptom
    is difficulty seeing in dim light or at night
  • Later as cones start to die, will get blind spots
    in the peripheral vision
  • With tunnel vision good vision may remain in
    the center- (central vision)

5
RP- continued
  • Person is considered legally blind when only 20
    degrees of central vision remain.
  • Some people may retain 5-10 degrees of good
    vision into old age.
  • Testing
  • USM Chip-microchip that can test a saliva sample
    (65-75 accurate)
  • ERG-Electroretinography measurement of nerve
    impulses in the retina (95 accurate)
  • Visual Field Test- side/peripheral vision

6
Usher Syndrome- Type l
  • Most common-estimated at 90
  • Born with severe to profound hearing loss in both
    ears
  • Balance problems- absent vestibular function
  • Night blindness in infancy or early childhood
  • Usually ASL signers
  • Delayed developmental milestones of lifting head,
    crawling, walking
  • Tunnel vision usually by age 16

7
Usher Syndrome- Type ll
  • Born with moderate to severe hearing loss-both
    ears show similar loss
  • Benefit from hearing aids
  • RP- Night blindness begins in teenage years- with
    tunnel vision present by late teens to early
    20s.
  • No balance issues
  • Normal motor milestones
  • Usually oral communicators- rely on lip-reading

8
Usher Syndrome- Type lll
  • Born with good hearing or mild hearing loss
  • Hearing loss progresses over time- hearing aids
    may need to be changed.
  • Begin as oral communicators- as hearing loss
    progresses- ASL communicators.
  • RP- Night blindness in childhood or teens- tunnel
    vision in the 20s- 30s
  • Can have a progressive balance disturbance

9
Behavioral Symptoms for Parents and Teachers-
(US-l)
  • Young children - harder time learning how to sit
    without support, crawl and walk. May prefer
    rolling to being on all fours. May have 5-point
    crawl-head down
  • Walking usually delayed (18 months or later)
  • Seen as clumsy children
  • May love twirling, spinning- dont get dizzy

10
Behavioral Picture - continued
  • As RP progresses
  • May naturally or automatically turn their head to
    scan visual field- not fully recognizing the
    extent of vision loss.
  • Bumps into things in front of their feet.
  • Tripping over curbs, stairs, people
  • May reach for something in front of them that
    they see clearly and knock something else over.
  • Spills when pouring liquids

11
Behavioral Picture- continued
  • Bump into open doors- not see the edge of the
    door, or hits head on kitchen cabinet
  • Reluctance to play in low light or outdoors at
    twilight/dark
  • May request that lights be left on at night, in
    hallways etc.
  • Difficulty adjusting to changes in light- going
    from low light to sunny outdoors- vice versa.
  • Avoids outdoor sports when sun is bright

12
Behavioral Picture- continued
  • Wears sunglasses- even inside
  • Likes to enter a room that is dark early- movie
    theater.
  • Avoids conversations in a darkened area.
  • Difficulty with riding a bicycle
  • When walking along a road at night, may stagger
    or lose balance after an oncoming car has passed.

13
School Behaviors and Considerations
  • Needs good contrast- has difficulty reading light
    copies
  • Turns head while reading
  • Uses fingers to mark place
  • Holds book close to the eyes or bends to read
  • Places face close to desk while writing
  • Sits near blackboard
  • Fails to understand or miss group instruction-
    may position self to one side of the group. Often
    last at completing group activities.

14
School Behaviors and Considerations-continued
  • May have repetitive behavior- likes to do things
    the same way. Routines are comforting,
    predictable and increase success!
  • Appears to ignore others standing to the side
  • Prefers conversation at 4-6 feet
  • Becomes anxious in unfamiliar areas or with new
    tasks.
  • Episodes of anger, frustration, emotional
    outbursts-normal grieving process. Can/will
    reoccur as vision decreases over time

15
Educational Needs
  • Schools need to provide
  • - academics- with modifications/adaptations
  • - orientation and mobility instruction
  • - athletics/sports- good for student as long
    as it
  • doesnt compromise safety.
  • - vision teacher/consultant- help with
    modifications

16
Educational Needs-continued
  • - communication- ASL, Braille, tactile
  • signing, captioning-need black box with
  • text for good contrast
  • - vocational exploration and training-
    skills
  • for future
  • - support/counseling- reduce isolation,
  • educate peers

17
Classroom Modifications
  • Teachers need to consider future dual-sensory
    impairment when identifying skills to teach- not
    just current status.
  • Full spectrum lighting if possible- helps us see
    fine details more easily, color matching, reduces
    glare, Helps lesson eye fatigue and strain when
    performing visually demanding tasks.
  • Seat student where they are comfortable-
    (front-side) so they can see chalkboard, teacher
    and other students in class.

18
Classroom Modifications- continued
  • Teacher/assistant needs to direct attention of
    the student to other students in class that are
    asking or answering questions. Can only see 1
    person at a time.
  • Windows should be behind the student. Teacher
    should avoid standing in front of window while
    communicating
  • Teacher should provide instruction using a
    non-cluttered background area-with good contrast
  • Furniture arrangement- Keep room the same if
    possible. Keep doors and drawers closed. Let the
    student know in advance of any changes.

19
Classroom Modifications-continued
  • Print materials should be maximum contrast. Use
    non-glare paper. Yellow transparency overlay is
    helpful to reduce glare and eye fatigue
  • Whiteboard- need dark markers- black, blue or
    purple best. Yellow difficult to see.
  • Students may need individual copies of graphs,
    charts, assignments to examine close up.
  • Students need additional time to complete tasks-
    time and a half minimum. May consider reducing
    the of questions or problems to equalize the
    time spent on task.

20
Home Modifications
  • Lighting- have child/youth experiment with
    different lighting options- full spectrum,
    goose-neck lamps, natural light, etc. to figure
    out what is best, where, and at what time of day.
    Use curtains/ shades to decrease glare
  • Good contrast helpful- tables, contact paper,
    place mats. Black and white usually best
  • Avoid visual clutter- on tables, bed
  • Use contrasting colors to differentiate between
    walls and floors- contrast molding can be
    helpful. Flat paint provides less glare

21
Home Modifications- continued
  • Outline doorways with contrasting border of
    color- tape, paint
  • Use paint or tape of contrasting color on edges
    of steps. Top and bottom step can be marked with
    contrasting stripe. Use of handrail on stairs
  • Provide a consistent and organized environment.
    Keep furniture and objects in consistent places.
    Keep walking areas free of low objects to run
    into or trip over.
  • Keep doors and cabinets fully open or closed

22
Home Modifications- continued
  • Use of flashlight in dimly lit areas
  • Plan for and allow more time for eyes to adjust
    to changes in light
  • Go early to events
  • Teach child/youth to advocate for themselves and
    what they need to function best
  • Identify strengths and interests

23
Emotional Considerations for Individual and Family
  • Can be very difficult to cope with initial
    diagnosis of US- debate about when to tell a
    child. Child may ask questions and want to know.
  • Questions should be answered honestly but
    constructively. Emphasize strengths.
  • Most professionals believe that students should
    know future implications by high school so that
    student can make educational or vocational
    choices that will compensate for eventual
    dual-sensory loss
  • Watch for increased isolation, talking or
    thinking of suicide
  • May not be safe to drive- HUGE issue for
    teenagers and adults

24
Emotional Considerations for Individual and Family
  • Anger, depression and denial- cycle between,
    before acceptance. Recycle as vision or hearing
    loss changes
  • When grieving, academic focus may decrease
  • Peers need education- deaf friends may think that
    the student with US is deliberately ignoring them
    or acting rude and start to pull away
  • Can be helpful to find a older mentor with US to
    help support child/youth, provide positive role
    model
  • Take advantage of resources- state and
    national-HKNC- 2 summer programs for 16-22 year
    olds.
  • Individual will need to learn self-advocacy
    skills

25
Conclusion
  • Early identification- offers more opportunity for
    learning adaptations/modifications
  • Helps with realistic vocational goals and
    learning independent life skills
  • Genetic counseling- may want-especially when
    considering children
  • Start treatment to slow down or arrest the
    progression of US
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