Students with Progressive Vision Loss

/ Texas School for the Blind & Visually Impaired
Outreach Programs
www.tsbvi.edu | 512-454-8631 | 1100 W. 45th St. | Austin, TX 78756

2017 Low Vision Conference:

May 11, 2017

Austin, TX

Considerations for Making Programming Decisions

Presented by

Emily Calvert, TVI, Consultant

Mary Shore, COMS, TSBVI Outreach Programs

Developed for

Texas School for the Blind & Visually Impaired

Outreach Programs

[Type text]

Progressive Vision Loss:

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?
Ø Visual acuity:
Ø Visual field:
Ø Night blindness:
Ø 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:
Ø Confidentiality:
Ø Expectations:
· Motor abilities:
· Other considerations:

3. Educational Considerations:

· Placement and grades:
· Current literacy
Ø Media (font size):
Ø Reading level:
· Related/instructional services:
· School contact:

Orientation and Mobility Areas of Considerations

Used 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.

Progressive Vision Loss with a Degenerative Medical Condition: TVI/O&M Collaborative Worksheet

Student Name
Date

1. Eye Condition Information:

2. General Student Information:

· Age of student:
· Age of onset:
· Additional disabilities:
· Medical concerns:
· Family Support:
Ø Confidentiality:
Ø Expectations:
· Motor abilities:
· Other considerations:

3. Educational Considerations:

· Placement and grades:
· Current literacy
Ø Media (font size):
Ø 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):

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

· 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

Resource

You 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, byM.M. Loftin,W. S. Koehler. Go to http://www.afb.org/store/Pages/ShoppingCart/ProductDetails.aspx?ProductId=jvib920107&ruling=No to purchase this article.

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.

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.

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.

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)