Prematurity and Vision

Friday 3 March 2006

Linda Bain
Royal Blind School

Getting Around

Ref: Understanding Low Vision, Edited by Randall T Jose, American Foundation for the Blind 1997 reprint (© 1983).
Range of severity - "minimal ocular damage with no visual impairment to complete retinal detachment and scarring that causes total blindness"
Persons with RLF "generally have no usable vision or have extremely low levels of visual acuity".

Ref: Disorders of Vision in Children, A Guide for Teachers and Carers, R Bowman, R Bowman & G Dutton, RNIB, 2001.
Other associations:
"Because these children are usually born prematurely there is a relatively high incidence of associated brain damage, which may cause learning difficulties and cerebral palsy."

Ref: Paediatric Visual Diagnosis Fact Sheet
www.blindbabies.org/factsheet_rop.htm

Visual and Behavioural Characteristics

"Many of the behaviors of children with ROP may be related to prematurity and not necessarily to vision loss. Learning difficulties associated with neurological disorders may accompany prematurity."
 These may show up in areas of:

• Abstract reasoning
• Unwillingness to touch and handle certain textures
• Blind mannerisms such as eye poking, body rocking  or hand flapping.

"The way a premie with ROP understands his position in space, or the manner he uses to walk (gait) may also be different than that of a child who has a different visual diagnosis."

"Getting Around" . . . and ME "GETTING ON A BIT!"

• Looking back over 10 years
• My work with 25 children diagnosed as having ROP
• Blind/Severely Visually Impaired
• Children based at Craigmillar Campus

ROP

One common characteristic

Considerable difficulty learning and remembering routes . . . even familiar, frequently travelled ones.

CASE STUDY: Fraser

• ROP
• Totally Blind
• Development Delays
• Language Disorder
• Latterly, Autistic

First started working with him in April 1993 (aged 9)

• Initial link – swimming!!!
• Mobility every week until he left school (age 18) 
• Passive - high dependency on others to meet his mobility, and daily living, needs
• Anxious traveller. Why?
  Because he got lost so easily and had many nasty bumps!
• Huge amount of Mobility input, yet very little progress
• Not so in other areas of development, eg; language and communication, social interaction skills.

The incident!

Anxiety about new life and leaving all that he was familiar with.

Cumulative effect of pressures, big "push" on as part of transition.

• Memory overload
• Constantly having to think about where you going
• Worrying about getting lost
• Trying to keep yourself safe . . . when you know that  you’re not good at this
• The need to always be organised and focused

Lack of realisation on the part of the sighted adult.

Summary of Routes travelled (from end of school day until bedtime)

• Class to Residential Area then on to bedroom. Changing out of school clothes and bed making
• Bedroom ---> Duty Room Dirty washing into laundry basket
• Duty Room ---> TV Room A chat with Amy
• TV Room ---> Dining Room Teatime
• Dining Room ---> TV Room Meeting to discuss events happening for week ahead.
• TV Room ---> revision of mobility routes (Dining room, bedroom and Nurse’s room)
• TV Room ---> Bedroom Organised for shower
• Bedroom ---> Shower Room
  Shower Room ---> Bedroom
  Bedroom ---> Duty Room For a chat and a doze!
• Duty Room ---> TV Room 
• TV Room ---> Duty Room Suppertime
• Duty Room ---> Bedroom At long last . . . bed!
  

Total number of journeys undertaken = 13 (not counting the extra mobility session in the middle of the evening!)

Fraser’s difficulties?

Got lost going from bedroom to Duty room because, as he left his bedroom, Fraser was carrying a couple of items of dirty washing in his right hand. He therefore turned left into the corridor, as it was his left hand with which he was trailing and he simply followed this hand. 

When the shout went up that it was time for tea, Fraser immediately stood up but only moved forwards to make his way out of the TV room when he was specifically told to do so.

Fraser has no difficulty recognising most, if not all, the signifiers in school and will freely say what they are on finding them. However, he does not fully understand how they can be used to help establish where he is or where he should be going next; where one room is in relation to another; to follow a route etc.

(Excerpts from Handout for Care Staff) WAYS TO HELP FRASER:

Say his name so that it is clear to him when he is expected to do something.

Speak to him in a quiet, calm and measured voice (he is acutely aware when you are unhappy with him, when he is "failing" etc).

Before he sets off from any room, take the time to sort out where he is and where he is going next. "Thinking Head On" is a phase he likes and responds well to and he also likes the choice of needing help. Ask him if he needs help or is able to "find his own way" or "do it on his own" so that he has choice and control.

When leaving a room, encourage him to use his hands to check for any clues, features, signifiers etc. that may be displayed on the wall either side of the doorway. 

When trailing, he has a tendency to let go and drift away from the shoreline he is following. Remind him to "stay with" or "follow" the rail, wall, whatever.

Fraser is quite clearly frightened of walking through open spaces and crossing doorways. He has started closing any open doors he is passing (did this with the Duty room door a few times and also shut the two single bedroom doors next to the wooden steps). Ensuring doors, where possible/appropriate, are kept closed would make it easier for Fraser. 

Fraser has no concept of a corridor that is; that it has ends and sides and different rooms along either side of it. He also has difficulty understanding many directional concepts such as in front of; behind; opposite, next to etc. When asked to move to the "other side" of the corridor, he doesn't understand what to do or where to go.

And the other young people with ROP? Do they experience the same difficulties?

• They are aware that they tend to get lost or confused when moving around.
• May lack strength and stamina and agility and coordination.
• Passiveness – heavy reliance on others to take them to where they want/need to go.
• Slow pace of travel – cautious, don’t like to be hurried and speed rarely varies.
• Frequent stopping and attempts to seek contact – physical or verbal – for support/reassurance.
• Need a great deal of prompting/reminding
• Poor self-protection skills. Know how to do the correct techniques but unable to sustain them.
• If they go off course, will keep on going, and going, and going . . .
• Tendency to shoreline. Dependency on continuous contact with a trailing surface and will follow it rather than move away at the appropriate time or cross open spaces.
• Identifying okay, but unable to use sound clues for orientation.
• Identifying okay, but unable to consistently use landmarks for orientation.
• Difficulty understanding directional concepts and notion of stairs/levels.
• Difficulty with sequencing and route reversal/reverse sequencing.

WHAT WE CAN DO TO HELP?

Ref: Paediatric Visual Diagnosis Fact Sheet TEACHING STRATEGIES

• "A multisensory teaching approach"


• "By using real objects when playing and working with the child and by involving the child in the processes of life, such as cooking or dressing, the child will develop more meaningful language and a better understanding of the way the world works."


• "Spoken information" to help the child understand the actions of people and things around him.

Beware of the dangers of this! Must back this up with practical, "hands-on", direct learning experiences.

• Help develop good listening skills
• OT and O&M services + support

TEACHING STRATEGIES . . . Mine!

• Advance listening - use of sound clues for orientation;
• Spend time working on directional concepts and notion of levels/floors;
• Develop confidence and trust – need to get to know child very well;
• Be aware of child picking up on negativity in voice or comments. A quiet, calm, encouraging voice - no matter how exasperated or impatient!
• Allow for lots of repetition and practising of routes.
• Avoid guiding from A to B, "shadowing" better. Keep Quiet!

TEACHING ROUTES

Before setting off, establish starting point, that is, where you are.
• Explore relevant landmarks at starting point. Use of feet and hands to distinguish differences in shape, size and texture. Sound clues?
• On finding something, encourage the child to investigate rather than automatically giving the answer - "what’s that you’ve found?" or "what room is this?"
• Encourage the child to verbalise the route about to be travelled.
• Preparation, by way of speaking through the route, should help with sequencing and quicker realisation when off course.
• Chunking, that is, thinking of the route in small chunks whilst walking it rather than as a whole. 
• Think of the next thing to find rather than final destination. What comes next?
• Limit number to be learned at any one time. 
• Learn in context, as part of daily routine.
• Simplify them so that they are easy to learn.
• Include landmarks that are easily recognisable/clearly distinguishable.
• Add in objects of reference or signifiers to give additional clues – but only if really necessary/appropriate.
• Remember that route reversal is much more difficult. Allow more learning time. Achieve route there first.
• Teach a clear end point - a landmark that will help the child recognise when they have gone too far.
• Allow the child to get lost. A great learning experience!

DO THESE STRATEGIES MAKE A DIFFERENCE?

Yes, absolutely!

• 25 pupils
• Wide range of academic ability 

Acknowledged that they had specific orientation difficulties - that they struggled to learn and remember routes and find their own way around.

THEY BENEFITED FROM:

• Teaching approaches used;
• Whole school approach; 
• Intensive O&M input + support throughout their school career;
• Lots of opportunity to practise, rehearse, develop skills and techniques.
• Families involved;
• Careful, sensitive handling – aware of the need to bolster self-esteem/ self-confidence/self-worth.