Texas School for the Blind & Visually ImpairedOutreach Programswww.tsbvi.edu | 512-454-8631 | 1100 W. 45th St. | Austin, TX 78756
2017 Low Vision Conference: Students with Progressive Vision LossMay 11, 2017Austin, TXConsiderations for Making Programming Decisions
Presented by Emily Calvert, TVI, [email protected] Mary Shore, COMS, TSBVI Outreach [email protected]
Developed for Texas School for the Blind & Visually ImpairedOutreach Programs
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Progressive Vision Loss:TVI/O&M Collaborative Worksheet
Student NameDate
1. Eye Condition Information: Review the eye report
Gather your own knowledge of eye disorder (contact agencies/look at websites associated with disorder).
Where is the student in the progression of the eye disorder?
Visual acuity:
Visual field:
Night blindness:
Photophobia:
Recommended low vision devices:
Need for low vision evaluation:
2. General Student Information: Age of student:
Age of onset:
Additional disabilities:
Medical concerns:
Family Support:
Confidentiality:
Expectations:
Motor abilities:
Other considerations:
3. Educational Considerations: Placement and
grades:
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Current literacy
Media (font size):
Reading level:
Related/instructional services:
School contact:
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Orientation and Mobility Areas of ConsiderationsUsed in Determining Need for Orientation and Mobility Services
Beverly Jackson Certified Orientation and Mobility Specialist
Education Specialist Region 13 Education Service Center
512-919-5331
Child’s level of safety, efficiency, confidence and independence (freedom of movement) is limited by visual impairment.
Child demonstrates reluctance, fear, hesitancy in exploring his/her environment due to his/her visual impairment.
Child demonstrates a lack of appropriate level of safety precautions when exploring/negotiating his/her environment that is impacted by the visual impairment.
Child demonstrates a lack of appropriate level of body and spatial awareness that is impacted by the visual impairment.
Child demonstrates a lack of awareness or understanding of vehicular and pedestrian traffic patterns and rules and their visual impairment is severe enough that the child is unable to see an entire intersection and all of its components.
Student’s visual impairment may limit or exclude driving privileges and/or student demonstrates a lack of awareness of transportation options and/or these skills to access these options at an appropriate level.
Student’s visual impairment results in a lack of awareness or responsibility in planning, problem solving, mentally mapping, and implementing travel routes.
Child functions at an inappropriate level in the ability to effectively and responsibly communicate needs in obtaining assistance from familiar and unfamiliar persons.
For a child birth to age 3 or with additional disabilities, the child’s vision is considered “severe after correction” and child is limited in his/her purposeful movement, exploration and awareness of immediate surroundings.
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Progressive Vision Loss with a Degenerative Medical Condition: TVI/O&M Collaborative Worksheet
Student Name
Date
1. Eye Condition Information: Review the eye report
Gather your own knowledge of eye disorder (contact agencies/look at websites associated with disorder).
Where is the student in the progression of the eye disorder?
Visual acuity:
Visual field:
Night blindness:
Photophobia:
Recommended low vision devices:
Need for low vision evaluation:
2. General Student Information: Age of student:
Age of onset:
Additional disabilities:
Medical concerns:
Family Support:
Confidentiality:
Expectations:
Motor abilities:
Other considerations:
3. Educational Considerations: Placement and grades:
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Current literacy
Media (font size):
Reading level:
Related/instructional services:
School contact:
4. Characteristics of Degenerative Condition: Vision:
Motor:
Cognitive:
Communication:
Medical/seizures:
5. Strategies: Keep it relevant & fun:
Add supports:
Back chaining:
Know health plan:
Know behavior interventions:
Consistent personnel:
Build lessons on previous knowledge (VI and O&M):
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BATTEN DISEASE
"It is now that matters." CONFIDENTIALITY IS VERY IMPORTANT!Document created by Wendy Bills and Emily Covert
WHAT IS IT? Neuronal Ceroid Lipofuscinoses disorder (NCL)
Neurodegenerative Disorder-normal development, then diagnosis
Autsomally Recessive Genes from both parents
1:50,000 affected
Several kinds-Juvenile Batten Disease is most common
Loss of brain cells
Decline is through stages in which the symptoms increase and dependence grows until the child is totally dependent on care and assistance from others
Always FATAL in late teens to early twenties
SYMPTOMS Vision Loss
Seizures-all kinds (petit mal, drop, grand mal)
Cognitive/Motor Decline o Motor speed
Loss of Balance
Walker/wheelchair
Dexterity
Sense of touch
Communication Loss
o Expressive Language impaired o Receptive language more intact
o Attention and working memory
o Stutter, word finding, dysfluency
o Short-term memory loss-good distant memory
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Behavior symptoms
o Depression
o Anxiety
o Aggression
o Sleep disorders
o Fears
o Psychotic symptoms
DEMANDS ON EDUCATIONAL SYSTEM Flexible
Regression- "unlearning"
Reverse learning
Lower developmental level
Variable emotional state
Connections needed between home/school/medical
Familiar people and content
ResourceYou may want to read this article in JVIB, available for purchase if you do not have access to back issues (January 1998). Proactive Strategies for Managing the Behavior of Children with Neurodegenerative Diseases and Visual Impairment, by M.M. Loftin , W. S. Koehler. Go to http://www.afb.org/store/Pages/ShoppingCart/ProductDetails.aspx?ProductId=jvib920107&ruling=No to purchase this article.
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OB - October, 2013
What we know about O: She is a precious, 10 year old girl, FIRST
She loves her Mom, Dad and her sister TONS
She’s curious, busy, and has places she wants to go
Thoughtful, kind, and good manners are important to her
She is impulsive and when she gets an idea she has to act on it
She is determined and methodical in her way
She likes dogs, animals, dolls, and swimming
She enjoys books-looks through quickly at first but returns and returns
She wants to be with people
She enjoys stickers, money, making arts and crafts, and rewards
Works for money and marbles at home (fills the jar with marbles for jobs completed and then turns them in for a prize)
She remembers what has been promised her
She needs confirmation and reassurance that she has done it correctly and is right
She prefers firm touch
She is still very visual
She walks well and does not run into objects
She is able to take care of some of her needs on her own
She wants to tell you things and is going to continue telling you things until she thinks you get it
She is fidgety and so needs objects in her hands
She needs movement
She likes to make things to keep or give away.
Most importantly, she has a very supportive family that wants her to be loved and happy and to feel a sense of accomplishment.
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Suggestions for working with Olivia as a student with Batten Disease
First HAVE FUN and know that you are making a difference!1. Consistency with people and routine is essential! Try to have the same person with her
for specific activities and then develop a routine so you give Olivia some organization to her ever-changing world. She is suffering with a degenerative, neurological disease that changes her world daily.
2. Work with familiar themes that can be explored through reading, looking at books, art activities, writing by making books, math, and activities of daily living. (Ex: Fall unit so books about fall, read about fall, what do animals do in the fall, paint leaves different colors, pick up leaves and glue in books, leaves ironed between wax paper for art, count leaves, add and subtract leaves, stamp with leaves, rake leaves, fall in leaves, step on construction paper leaves around the room, leaf hunt, categorize leaves by tree or size, etc.)
3. Begin to add tactile components to her visual activities. (raised lines, textures, object representations, parts of objects, anything she can feel)
4. Try a calendar system with picture, word, and tactile symbol or object to help her organize her time. Start with 3 activities. Maybe start with color, read a book, and swing for when she comes in the morning. For color- a picture of a box of crayons, a color glued onto the picture and the word “color” on the card. For Read a book – Picture of a book, a small book glued on, and the words, “read a book” on the card. You get the idea. Wendy, the teacher of students with visual impairments, and Ann have offered to help with these. Use a finished box so she knows she is finished with that activity.
5. Try attaching these tactile symbols to a Voice Output Device, if needed. We just used Velcro to attach to the VOD.
6. Tactile symbols could be used for locations at the school: Lori’s room, library, art, music, cafeteria, gym, etc. Make 3 of each of these symbols-one for the wall or entrance to that area, one for Olivia’s calendar system, and one for her to carry with her to the designated location. She will place the symbol in a finished box on return to Lori’s room.
7. Introduce Braille just for games and maybe recognizing her things. Try g, y, b, and r for green, yellow, blue, and red on her UNO cards. If that works then move toward the numbers for UNO. This skill will allow Olivia to enjoy playing games (go fish, UNO, Sorry, Battle, BINGO, and others).
8. Also, sign language has been effective as a means of communication when speech cannot be understood. I would pick 10 signs that are agreed upon by Mrs. Burtwistle and Lori. Try these signs to see of Olivia is interested and will learn them. We started with restroom, eat, drink, music, and book. Pick signs that will be needed always by Olivia. My students did not use them until later in life, but we practiced daily.
9. Keep activities age appropriate and speak with her in a normal, calm tone.
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10.A supply bag would be helpful in each room Olivia goes to with glue stick, stickers, tactile materials, paper, tape, colors, and whatever else you see you need. Put these items in a baggie or a box so that whoever is traveling with Olivia will not be running for supplies and has her hands free.
11.Find jobs for Olivia to do that involve movement and helping others using what she likes. The librarian suggested she could shelve books for her using the sticks that mark the place that books belong. Maybe taking materials to the office, etc.
12.Use travel in her day since she needs movement. An idea might be to move her supplies away from her desk so she has to get her calendar symbol, then her materials needed, next, move to her desk.
13.Keep the physical areas the same as much as possible. If Olivia loses more vision, she will need items to remain where she remembers them.
14.Patience and kindness are key when Olivia loses control. She does not want to do the wrong thing.
15.When Olivia is trying to tell you something and you do not understand try using a questioning strategy to help get at what she wants. We started with: Was it at school or home? Was it a person or thing? What letter did it start with? The Speech Therapist has a strategy to use with her.
16.Keep frustration to a minimum. Know that when you find an activity that Olivia likes, you may repeat that activity. It seems boring to us at times, but it is consistent and familiar to Olivia.
17.Find what series books she likes and use those. The characters are familiar and she will like that. We used Magic Tree House Books, American Girl Books, Junie B. Jones, Matt Christopher, and Babysitter Club. I am sure there are new series now that you can use that she would enjoy listening to and completing activities around. We used tape books also. Sometimes the familiar stories on tape would calm our students.
18.Know that Olivia must finish what she starts and sometimes will go on and on about one thing. Just listen and be patient.
19.Since she uses reward systems at home, I would try them at school. She could earn money for completing certain activities and then purchase prizes from the Treasure Chest. If she is working for a specific prize, be sure to save it for her because she will remember what she is working towards!
20.Try having a basket by her backpack for completed activities so she can reach them and review them more easily.
21.She enjoyed worksheets during testing. Feel free to use those as she can do them.
22.Do not ask too many open ended questions as word retrieval is a problem. Give 2 choices.
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RW - STRATEGIES-FALL, 2011
VISION LOSS No vision left
Uses Braille
o Reads pre-primer, familiar stories with prompts1
o Accept what she brailles-hard to read
o Circles multiple choices in Braille
o May want to Braille word that she is trying to say
o Needs help putting paper in brailler
o Makes experience books with tactile pictures with assistance
SEIZURES Grand mal and maybe others
Specific plan in place-call nurse immediately, time seizures
On seizure medication
Seizures will increase with progression of disease
MOTOR Walks with walker in classroom – very limited – with 2 adults
Uses wheelchair
Walks very slowly and shuffles feet
When using the walker, she may fatigue so allow to sit when waiting
Do not push her seated in the walker
Wheelchair will be needed for longer distance
Fire drill-start early if possible
No stairs
Maintain some form of exercise, but do not force any exercise
No sitting on the floor (can’t get up)
Has a sense of touch-actually heightened
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COGNITIVE SKILLS Does single digit math single step word problems (addition and subtraction)
Uses a talking calculator with prompts for number placement
Single step directions
Shorten assignments
Very frequent breaks-almost after every activity
Activity must connect to what she already knows
Lower demand for perfection and performance; high demand will cause aggravation
Maintenance of skills
Shorter working memory
COMMUNICATION Receptive is good-talk like anyone else of the same age
Very hard to understand Her’s speech
Single word responses
Often leaves off first part of the work-says ending sound
Will tell you beginning letter or attempt to Braille word wants to say
Severe stuttering and repeating of words
Enjoys adult conversation more than peers, but likes to be with peers
Comprehension depends on person being in a situation that is familiar and does not contain too many new elements
Ask yes/no questions-few open ended questions
Needs an object calendar for anticipation and choice making
Choice making should be between 2 items
Sign language-use signs for wants (book with signs)
Say your name when approaching Her
Extend wait time for response
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BEHAVIOR Suffers from depression and on medication
High anxiety so limit frustration and expectations
Very little aggression ever seen
Laughs and cries uncontrollably at times-quiet place
Consistency so important
Does not sleep well at night so may need rest time
Does have some bad dreams-hallucinations
One person give directions at a time
Calm, quiet voice-tone of voice is important (calm)
Do not threaten
Expectations need to be verbalized to Her
Realistic expectations need to be set but be flexible according to the day
Give time to adjust to new demand or change
Rewards-love stickers or tickets, etc. and immediate
Predictable schedule
Music calms her down or being read to
FOOD Cloth napkins are so helpful at meals and snacks
Straw or cup
Remind her to slow down when eating
Small portions of snacks or desserts/definitely no seconds
Decide on lunch choice before going to the cafeteria
If cooking a snack then no dessert at lunch
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RW - STRATEGIES-FALL 2014
VISION LOSS No vision left
Uses Braille only to play familiar games
SEIZURES Grand mal and others
Specific plan in place-call nurse, time seizures
On seizure medication which may change periodically
Seizures will increase with progression of disease
MOTOR Uses wheelchair
Has not been weight bearing so the lift is being used for transfers (check with PT)
Sense of touch heightened, so don’t touch without asking
Needs different positions throughout the day
COGNITIVE SKILLS Single step directions with single person talking
Very short assignments
Very frequent breaks- after every activity
Activity must connect to what she already knows
Lower demand for perfection and performance; high demand will cause agitation
Maintenance of skills-really for fun and to make her part of the group
Very limited short term memory
Comprehension limited to previously learned materials
COMMUNICATION Receptive is good- talk like someone her own age
Perfect hearing so will hear anything in room
Very difficult to understand her speech
Give 2 choice options and make the response simple with a single word
If can’t understand give choices of place, people, or activity
You can offer beginning letter of word you do not understand
Severe stuttering and repeating of sounds
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Enjoys adult conversation more than peers, except PALS
Wants to be where peers are most of the time
Do not ask open ended questions
Needs an object calendar for anticipation and choice making
Sign language-see book for signs she knows (Restroom for sure)
Say your name when approaching Rachel
Extend wait time for response
Does not understand teasing, so don’t
Does remember well if you promise her something- so don’t mention anything (food or activity) that you cannot make good
BEHAVIOR Suffers from depression
High anxiety so limit frustration and expectations
Very little aggression ever seen
Laughs and cries uncontrollably at times – quiet place
Consistency is VERY important
Does not sleep well at night so may need a rest time
Does have bad dreams and hallucinations
One person give directions at a time
Calm, quiet voice, even whispering is helpful
Do not threaten or take privileges away
Expectations need to be verbalized to Her
Give time to adjust to new demand or change
Rewards- love stickers, tickets, game, and must be immediate
Predictable schedule
Music and being read to calm Her down
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BT - FALL 2010: STRATEGIES
VISION LOSS No vision left
Uses Braille
Feels for braille on page
Likes to hand over hand make braille cards
Likes to help make memory books w/tactile images.
SEIZURES Grand mal and maybe others
Specific plan in place-call nurse immediately, time length of seizures
On seizure medication
Seizures will increase with progression of disease
MOTOR/COGNITIVE DECLINE Wheelchair for mobility
Uses a stander, lift, and gait trainer (check w/PT)
Fire drill-start early if possible
Maintain some form of exercise
Still uses hands with verbal prompts and some physical directing
Use hand under hand so he maintains some control
Still has some sense of touch
Single step directions
Activity must connect to what he already knows
Lower demand for perfection and performance-high demand will cause aggravation
Maintenance of skills
Shorter working memory
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COMMUNICATION Receptive is good-talk like anyone else of the same age
Single word responses
Severe stuttering and repeating of words
Likes to continue talking and repeat when others talk
Enjoys adult conversation more than peers, but likes to be with peers
Comprehension depends on person being in a situation that is a familiar and does not contain too many new elements.
Ask yes/no questions—few open ended questions
Needs an object calendar for schedule
Choice making should be between no more than 2 items
Facial muscles lose their mobility so when happy may not see his smile
Enjoys voice output devices
Extend wait time for responses
Always say your name when approaching His
Drooling more
BEHAVIOR No aggression seen
Consistency so important
Does not sleep well at night so may need rest time
Does have some bad dreams-hallucinations, maybe
One person give directions at a time
Calm, quiet voice-tone of voice is important
Do not threaten
Realistic expectations set with His
Give time to adjust to new demand or change
Predictable schedule
Cannot always comply with adult demands to be quiet
Give him an object to hold (calendar object) to keep his hand busy and from engaging in unwanted repetitive movements
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FOOD Straw for drinks
Remind him to take small bites
Mom will send lunch Tues-Fri he will buy pizza on Monday
Cut food in small bites
Offer finger foods
All foods may be fed to him
Avoid hard crunchy food and salad
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2017 Low Vision Conference: Students with Progressive Vision Loss – Calvert, E. & Shore, M. 19
