A New Year Post II - The Desperate Tale of a Visually Impaired Girl (Part 2) 

©MJ Sparrow 

17. After just the second day

The teacher took their work away 

And Marcus undertook to mark 

The page of writing by Miss Sparks

18. With many errors in her text 

Very little was correct

“The little lassie must be struggling”, 

In his head these thoughts were bubbling

19. ”It looks like I must simplify 

And every lesson modify”. 

However Marcus did not know 

That Silv’ was not at all below 

The other children in her class

20.  Just that she could not detect 

The letters she could not inspect 

And thus the meaning was not clear

 Of marks that Marcus scribbled there

21. Silvia in her council flat

Spent evenings reading this and that 

Especially stories and poetry

She dreamt of chocolate and factories,

22. Matilda and the BFG

The Gruffalo, The Giving Tree 

Whatever she could get her hands on 

AA Milne, Enid Blyton, 

Beatrix Potter, Julia Donaldson 

Jacqueline Wilson, Michael Rosen 

David Walliams, JK Rowling.

23. Silvia’s reading was amazing 

And her language was astounding 

But reading books was quite a strain

 It pricked her eyes with a sharp pain

24. So mum had found a charity 

That modified them properly

The books were large and hard to fold 

With writing that was big and bold

25. And thick dark words on light background  

It was a snap to get around 

She had the books made up for her 

And customised to cut the blur

26. Silvia Sparks was very young

When gradually it dawned on mum 

That Silv was bumping into things 

Like table tops and rubbish bins

27. And often she would lose her place 

Whilst stuffing beans into her face 

And what is more she hit the door 

And banged her nose in corridors

28. And sadly sometimes didn’t know 

Her mummy’s face from Uncle Jo’s 

She saw a doctor for her eyes 

The news that came was no surprise:

29. ”Your Silvia has an eye disease 

It’s called an optic dystrophy; 

Which really means if I must tell 

That Silvia didn’t see so well.”

(to be continued)

 Deafblindness or Dual Sensory Impairment and the Social Worker   

source:-  British Association of Social Workers

When I came across this website, I felt I had to share it as it's a neglected area of expertise and one we should all be more aware of. This was written specifically for social workers, but may be of interest to many others. 

‘Deafblind my arse’. Such was the disbelieving response of a fellow train passenger to 16-year-old Saule as she tried to explain that her sister, Karolina, was deafblind, and that was why she had temporarily lifted her mask: to enable Karolina to lip-read.

It was the final insult at the end of an outburst of verbal abuse, captured on video and posted online by The Guardian at the end of July. In response to the Covid-19 pandemic, wearing face coverings on public transport became compulsory last June, but the regulations make it clear that there is an exemption for someone who is travelling with or assisting another person who relies on lip-reading.

The distressing experience of Saule and Karolina, and that of other disabled people, has led charitable organisations to call on the government to actively promote public awareness about those exempt from the face covering regulations. Yet, Karolina and Saule’s experience highlights it is not only the regulations that are often unknown or misunderstood but also deafblindness itself.

As a severe and complex condition, with different causes, deafblindness affects people in different ways, though all share impairment in, or total loss of, both vision and hearing. Sometimes termed dual sensory loss, it can be a congenital or acquired condition. 

Though there are significant differences between these, it is more complex than a simple binary distinction might suggest. Synergy is a unifying feature: the combination of sensory impairment results in a unique experience, more than the existence of hearing impairment/deafness and visual impairment. Deafblindness prevents a person from using one sense to compensate for impairment in the other. Therefore, even a relatively minor impairment in one of the distance senses has a significant impact on function when it exists in combination with another.

This complexity contributes to the misunderstanding of deafblindness. Ignorance, comparatively low prevalence rates, and the invisibility of the condition are also known contributory factors. It is not only the condition itself that is misunderstood, but also the extent of an individual's deafblind impairment, its nature and impact, the behaviour of deafblind people, and their linguistic and communicative methods and needs.

In seeking to address such misunderstanding, and in recognition of the birth month of Helen Keller – author, activist and the first deafblind person known to be educated to degree level – June is designated Deafblindness Awareness month. But unlike other awareness days, weeks and months, this one comes and goes with little or no comment from professional social work organisations.

This is curious, when one considers the known psychosocial impact of deafblindness; effects often more significant than audiological and ophthalmic matters, and known to adversely affect quality of life. 

Deafblindness impacts a person’s communication, mobility and access to information. Such functional difficulties, rather than clinical assessment of hearing and vision, are central to the definition of the condition adopted by the Department of Health and Social Care. 

It can challenge a person’s independence, including their ability to complete daily activities, and can affect family, parental and personal relationships, one’s sense of identity and social participation. Deafblind people can encounter high levels of social isolation and experience ongoing loss. It is unsurprising therefore, that research suggests they are at increased risk of emotional, psychological and mental health problems.

Touch is deafblind people’s most important sense. It enables communication and the expression of friendship, emotion and connection. Yet it is also a potential source of vulnerability. The nature of physical contact can be misinterpreted by the deafblind person or their interlocutor. Deafblind children become accustomed to much higher levels of touch compared to their hearing-sighted peers. How do they know when that touch is inappropriate or abusive? 

Deafblind people may also be vulnerable to physical harms or injury, associated with accidents and falls, being exploited or a victim of crime. Nevertheless, the identification of deafblind people as a vulnerable group has also resulted in persistent misunderstanding, a perception of incapability and the neglect of deafblind people’s agency, creativity and ability, resulting in overprotection and control.

Surely such matters are of concern to social work? Relationships, wellbeing, communication, social participation, and vulnerability: these are mainstream concepts in social work theory and practice.

Since the late 1980s, public services have increasingly recognised the unmet needs of deafblind people. It was the untimely death of the deafblind woman Beverley Lewis, that prompted Gloucestershire social services to establish an ‘Adults at Risk Unit’ and develop adult protection policy and procedures. The particular challenges Covid-19 has posed to deafblind people is also highlighted in this article.

A call to the social work profession

The Care Act 2014 and associated provisions place explicit obligations towards deafblind people upon English local authorities. Deafblindness is mentioned more than 20 times in the Care and Support Statutory Guidance.

Since these provisions came into force, there has been substantial progress in meeting deafblind people’s needs, and local authorities are supporting increasing numbers of staff to gain qualifications and become deafblind assessors. 

The latter is welcome, as the need for increased training on deafblindness among social care professionals has been recognised for some time. However, there is still much more to do. A survey by charity Sense of deafblind people’s experiences, highlights ongoing barriers including limited awareness among social workers of the legal duties owed to deafblind people; difficulties gaining access to specialist assessment and support; completion of assessments by unsuitably or non-qualified staff and the non-involvement of specialists in care and support planning, sign off and reviews.

The Social Services and Wellbeing (Wales) Act 2014 similarly places duties upon local authorities. Explicit reference to local authorities’ responsibility to provide appropriate care and support for deafblind people is evident in the accompanying Code of Practice. 

The duties are similar to those in England, but differences are evident. In Wales, the requirement for local authorities to register those who “have sight and hearing impairments, which in combination, have a significant effect on their day to day lives” is in the primary legislation.

Deafblindness is a minority impairment. Nevertheless, while determining the prevalence of the condition is complex, researchers agree it increases with age. The number of deafblind people is therefore predicted to grow as the population ages. 

This demographic trend, and the legal provisions as described, suggest that social workers should develop their knowledge of deafblindness and build their capacity in this field. Our call on the profession to do so is also informed by our belief that social work has much to contribute to the wellbeing of deafblind people. 

In view of the psychosocial difficulties associated with the impairment, social work’s effectiveness in combining practical and emotional support suggests it’s ideally placed to support this population. Additionally, the complexity of the condition means deafblind people often require a multi-disciplinary response: social work skills of co-ordination and local community-based knowledge may ensure its helpfulness. Finally, as a strengths and rights based profession, social work has the potential to address the misunderstanding of deafblindness and challenge the perception of deafblind people as incapable. 

This seems anything but niche to us.

 A New Year Post - The Desperate Tale of a Visually Impaired Girl (Part 1) 

©MJ Sparrow

1. Silvia Sparks went to St Cedds 

She was one of thirty kids
She wore a pair of big round specs
That looked just like the old LORGNETTES

 

2. With a handle fixed upon one side 

And grown-ups held them to their eyes 

Some others in the school had glasses 

Like Molly Minn in Cedar class

 

3. Molly was severe myopic 

And when on the class’s nature topic 

She could only see her nose
She loved to hold and smell a rose

 

4. Because she was an avid learner 

To see some more and even further 

She kept a gadget in her pocket 

A small contraption made of plastic

 

5. One day when she was in gymnastics 

Mervin Briggs pinched her device 

Ignoring everyone’s advice
He crushed it in a metal vice

 

6. Of course he had to pay the price 

But Molly burst in floods of tears 

That must have lasted seven years.

 

7.  Silvia had GIGANTIC specs 

With a concave lens made from perspex 

To be precise they were trivex 

Which she prefers to polycarbonate

 

8. Cos’ they’re light and scratch resistant 

Concave means they’re curving inward 

They stop her learning being hindered, 

And make the board a little clearer

 

9. Which always seems to help to cheer her 

They definitely helped a little
But not when she sat in the middle 

And certainly, never at the back 

Where all she saw was fuzzy black 

10. In Silvia’s class of five-year-olds 

Some were mildly uncontrolled
The teacher called them ‘full of beans’ 

But mum said they should eat their greens.

 

11. The noisiest was Bobby Boyd 

Mainly when they were outside 

At playtime all he did was eat 

Haribos his favourite sweet

 

12. Plus chocolate, fudge and jelly beans 

He often crashed in the canteen
To feast upon his custard creams 

Bobby was extremely bubbly

 

13. Always active, sometimes funny 

Mummy said it was the sugar 

She called it his candy trigger 

But Bobby never bothered Silv’

 

14. Just the teacher Marcus Mills 

Mr Mills was Jack the lad 

Young and cheeky, not so bad 

He was new to this profession

 

15. He’d only taught the kids one session 

So when it came to Silvia
He didn’t really understand her
He didn’t know she couldn’t see

 

16. What he wrote efficiently 

When he scribbled on the board 

Though his words were always heard 

To her the text was always blurred. 

(to be continued ...) 

 What Strategies do you recommend for a vision impaired child with nystagmus or ROP

For a little girl of nursery or kindergarten age (see post ROP 4/12/22) I recommend the following:

1. Extra practice with fine motor skills to develop her 3-D compensatory skills. Activities such as drawing, threading, stacking will help her develop her skills. 
2. Isobel will benefit from a writing slope or upright easel in class/nursery to obviate the need to bend her neck and thus avoid potential postural problems.  
3. Adults should enhance the degree and quality of language they use with Isobel. A child with visual impairment benefits from increased description and explanation to compensate for their lack of vision. 
4. She would benefit from extra support when in a low light environment. 
5. In the playground Isobel would benefit from adult supervision to ensure her safety when moving across and around obstacles. 
6. Isobel will benefit from a multi-sensory approach to her learning. She should have enhanced access to the use and stimulation of all her senses. A range of sensory experiences will ensure she learns to compensate for reduced vision in accessing information within her environment.  
7. Isobel will benefit from a clutter-free environment. The positioning of furniture should be kept as stable as possible and moving tables and chairs kept to a minimum. The floor should be kept free from trip hazards and obstacles. 
8. Pictures and letters presented to Isobel should be big, bold and bright and on a well contrasted background. 
9. Attention to be paid to contrast in her learning materials. She will benefit from off-white paper, preferably a pastel colour to reduce the glare from white paper. 
10. Isobel will benefit from enhanced lighting in her immediate leaning environment. She will benefit from a classroom that is well lit, with average ambient lighting levels of at least 300 lux and access to a directed task lamp shining over her work area to provide levels of a minimum 500 lux when needed. She should not be in the path of direct sunlight and windows should be to her back.  Blinds or curtains should be used to control the light levels. 
11. Isobel requires extra time for tasks because her eyes are slow in changing focus due to nystagmus. She will take longer scanning a page whether it is writing or pictures. 
12. It will benefit Isobel if an adult takes the time to talk about activities in advance with her. She needs to be prepared and able to anticipate what is coming. In cases where she may miss a visual cue an adult should prepare her in advance. When throwing a ball to her always talk it through first with her so she is not taken by surprise. 
13. In a nursery environment Isobel will benefit from good structure, periods of quietness and calm, varied activities, a large play element in all activities, short focused activities, increased verbal description and explanation; she will benefit from extra explanation of the concepts of comparative size and distance. 
14. Children with visual impairments may become sensitive about being different and the management of her LSA will need careful monitoring. Some awareness-raising may need to be done with her class so they understand her visual needs and to avoid teasing.  
15. Isobel would benefit from a mobility assessment. She is unsure when in unfamiliar places and will benefit from ongoing input from a mobility trainer. 
16. In her early days at primary school Isobel will benefit from becoming familiar with specialist equipment such as a cctv (e.g. Professional Vision Services ‘Student’) and low vision aids (monocular and dome / bar magnifier).
17. Isobel will benefit from her own laptop and training in touch typing from an early age. 
18. Isobel may benefit from the use of technology such as a kindle or I-Pad for access to texts.
19. Isobel will benefit from ongoing input in her educational settings from a qualified teacher for visual impairment (QTVI). Her teachers will require initial and additional training and ongoing advice. Any LSA attached to Isobel will require support and regular training and advice and would be expected to cascade his or her training to other staff involved.
20. The building will need an audit to check its suitability for a visually impaired child. Basic adaptations such as yellow tape to the nosings of the stairs and steps will need to be in place before Isobel starts. 

The Role of a  learning support assistant for Isobel (kindergarten age)

6. A 1:1 supporting f/t or p/t adult will be helpful to ensure her safety 

-in the playground during breaks and playtime

-in class to check that the floor and room is clear of trip hazards and obstacles

-when moving through varying lighting conditions or low light conditions 

7. To sit with her during circle times and group sessions where the big book is used with the whole class. Isobel will benefit from her own copy of books and an adult to point out parts of the book the teacher is showing. 
8. To adapt learning materials especially for her including photocopying parts of pictures and texts to provide good spacing, contrast and colour – this requires advance notice and liaison with the teacher at regular intervals. A dedicated LSA will need to have time to do this. 
9. To sit with her and point out what the teacher is writing or drawing on the board. To give extra description and explanation of what is going on around her. 
10. A curriculum that is tailored and adapted to meet Isobel’s needs. Isobel is curious and inquisitive; she enjoys sensory play, and likes to be active. For this reason an adult dedicated to working with Isobel should be able to prepare learning materials that will meet her visual needs. At the same time because she will require extra time to complete tasks that are visually demanding and visually tiring a support assistant would be of benefit for Isobel during much of the day. That support should be scaffolded as appropriate.  

 

RETINOPATHY OF PREMATURITY - INTRODUCING ISOBEL

1. Summary of condition

Isobel (pseudonym) was born premature at 23 weeks and 6 days with stage 3/4b ROP and needed emergency treatment in the hospital for detached retina. Both eyes had laser treatment but treatment to the left eye was unsuccessful. The right eye was stage 3 (plus disease) with enlarged and twisted blood vessels; surgery was successful. The left eye was partially detached and progressed to stage 4b and surgery was unsuccessful. Furthermore the laser treatment burned the periphery of the retinas leaving her with restricted visual fields. The residual scarring also left Isobel with various unspecified ‘blind spots’ across her peripheral right retina.

2. What is ROP?

Retinopathy of prematurity (ROP) affects premature babies born before 31 weeks and the smaller the baby the higher the risk of it developing. In serious cases it leads to permanent visual impairment and blindness. The retina develops and matures in-utero but in premature infants the blood vessels of the retina are not fully developed. After a premature birth the blood vessels in the infant’s retina continue developing but in some cases abnormally. New abnormal blood vessels begin to grow. Because they are fragile and immature they proceed to leak in the retina and they leave behind scar tissue. In serious cases the scars can pull on the retina and cause the retina to detach from the eye. Several factors contribute to the disease developing, one of which is an excess of oxygen. ROP is associated with other eye conditions, especially squints, cataracts, glaucoma, myopia and nystagmus.  In the majority of cases ROP resolves itself but in a small number of cases (as with Isobel) it needs immediate intervention to prevent blindness. 

THE FIVE STAGES OF ROP

Stage 1 - Mild: Abnormal blood vessels grow in the retina. No treatment is needed. The child gains normal vision eventually. It resolves itself. 

Stage 2 - Moderate: The blood vessels are slightly more abnormal. Many children do not need treatment and have normal vision in later childhood. 

Stage 3 - Severe:  blood vessels grow more abnormally. What makes this particularly severe is the growth of abnormal blood vessels in the centre of the eye instead of along the surface of the retina as is normal.  In some cases no treatment is needed. If the blood vessels are enlarged and twisted (called ‘plus disease’) intervention is needed. 

 Stage 4 - Partly detached retina: the scar pulls away and bleeding occurs, abnormal vessels pulling the retina away from the wall of the eye. 

Stage 5 - Fully detached retina: final stage. The retina pulls right away from the inner lining of the eye. With no intervention blindness may result. 

Treatment 

Laser therapy "burns away" part of the periphery of the retina, which has no normal blood vessels. In doing this, laser treatment destroys the peripheral areas of the retina, slowing or reversing the abnormal growth of blood vessels. But the treatment also destroys some side vision. This is done to save the most important part of sight—the sharp, central vision.

1. Isobel’s Vision

Isobel was born around 24 weeks with stage 3/4b ROP and needed emergency treatment in the hospital for a partially detached retina in the left and a potential detachment in the right. Both eyes had laser treatment (burning of the peripheral retina) but treatment to the left eye was unsuccessful. The left eye remains microphthalmic (small) and strabismic (squint) and sees very little; the right eye is myopic with restricted visual fields.  To use her right eye she turns her head to one side to see.  

1. Visual acuity 

Isobel has scarring on her retinas, the left eye being the most affected; it is microphthalmic (small, not fully developed), amblyopic (lazy) with a convergent strabismus (inward squint) and with scarring directly over the central vision. The left eye has light perception and no useful central vision. The retina of the right eye is scarred though less so and has a visual acuity of 6/48 (Snellen) or 0.90 (LogMAR). This is based on the Cardiff cards preferential looking test (she made no response to the Kay Picture test). 

Isobel is functionally monocular with no useful vision in her left eye. Both eyes also have nystagmus (wobbly eyes). Nystagmus on its own can seriously reduce distance vision and is a condition that is exacerbated by fatigue, associated with focusing difficulties and causes the sufferer to take up to 25% longer over normal visual tasks. Patching has been suggested for the left strabismic eye but has not been implemented at home. Patching would in any case cause Isobel some distress, as it would render her functionally blind. She has been prescribed glasses for myopia but is not made to wear them consistently. Being monocular Isobel has neither depth perception nor three-dimensional vision. 

Isobel turns her head to the right to look. She tends to trip and has some difficulty descending stairs. Isobel is light sensitive and reacts to glare and strong light. She brings objects a few inches distance from her face to examine them. She cannot identify people at all if they are more than five or six metres away. 

1. Near vision 

Isobel is able to distinguish a visual target of 2-3cm in size at a distance of one metre. This is not perfect vision for a child of 2.5 years old but it is useful vision. Her near vision is significantly better than her distance vision. It will be necessary to ensure there is good spacing between all details she is presented with. Good separation between details and visual elements on a page is essential with nystagmus as letters and images can become blurred and merge together. Despite her myopia Isobel peers close to details to look. She is able to see a visual target equivalent to point size 18 at 15 cm. In an educational setting she will benefit from print and learning materials of approximately this size or preferably larger i.e. 24 (Arial font). This is practical in a nursery (and reception) setting as many books are already this size, but as the curriculum becomes more demanding it will require more and more adaptations on the part of the staff. Isobel will have difficulty sharing equipment and materials. Isobel will always need her own copy of a book and her own computer where necessary. She will need a big book for herself during story time. 

2. Eye contact 

Isobel has difficulty making direct eye contact and turns her head to achieve her best vision as is often the case with nystagmus and monocular vision. This also has social implications: other children may wonder why Isobel does this and it may cause her to react by becoming withdrawn or to overcompensate by denying her condition. Isobel may sometimes approach others too closely and may need to be shown what is and what is not appropriate social behaviour. 

3. Nystagmus

Nystagmus creates an unsteady and blurred image on the retina that is caused by the constant involuntary eye movements. It reduces the clarity, resolution and sharpness of her vision to the extent that she is unable to recognise details such as a familiar face beyond 5metres. This will affect her ability to access texts on the board in an educational setting. Nystagmus is moreover a variable condition and a child can perform better or worse depending on factors such as fatigue, health, mood, stress and time of day. Isobel will need at some point to understand her own eye condition so that she can explain all about nystagmus and ROP to others. She will need to become her own advocate. The best way to deal with embarrassment about her visual impairment is to talk about it. 

1. Strategies - summary

I recommend the following modifications to the educational setting and curriculum:

1. Extra practice with fine motor skills.
2. A writing slope or upright easel.
3. Adults should enhance the degree and quality of language they use with Isobel. 
4. Extra support in a low light environment. 
5. In the playground she would benefit from adult supervision.
6. A multi-sensory approach to learning. 
7. Isobel will benefit from a clutter-free environment. 
8. Pictures and letters presented to Isobel should be big, bold and bright.
9. Attention to be paid to contrast in her learning materials. 
10. She will benefit from enhanced lighting.
11. Extra time for tasks because her eyes are slow in changing focus.
12. Pre-teaching - adult to talk about activities in advance with her. 
13. Good structure, periods of quietness and calm, varied activities, a large play element.
14. Awareness-raising  with her class so they understand her visual needs and to avoid teasing.  
15. A mobility assessment. 
16. Specialist equipment such as a cctv (e.g. Professional Vision Services ‘Student’) and low vision aids (monocular and dome / bar magnifier).
17. Laptop and training in touch typing at some point / from an early age. 
18. Technology such as a kindle or I-Pad for access to texts.
19. Ongoing input in her educational settings from a qualified teacher for visual impairment (QTVI). Her teachers will require initial and additional training.
20. The building will need an audit.

The Role of a  learning support assistant for Isobel 

- To ensure her safety.

- To sit with her during circle times and group sessions where the big book is used.

- To adapt learning materials

- To sit with her and point out what the teacher is writing 

- A curriculum that is tailored and adapted to meet her needs. 

NB For an expanded version of these strategies see post 6/12/22

 

Simultanagnosia - The brain is confused by a busy visual scene

If you have come across children, whose eyes are tested ‘normal’, yet still have problems making sense of what they see, you might be dealing with a CVI called ‘simultanagnosia’. This is not common but can be profoundly disabling. It prevents a person seeing and comprehending many things at once, yet they can see single objects if presented on their own against a contrasting background. The world can become a chaotic, confusing place, and the child may be over-stimulated and overwhelmed. Those with severe simultanagnosia have a limited window of visual attention and cannot see more than one object at a time. It’s a little like tunnel vision. Their world is patchy and disjointed; it’s sometimes called the ‘Swiss cheese effect’. So they pick out an object, but they miss the "big picture."

I have come across this a few times. A little boy with microcephaly, (a condition where the brain is under-developed), demonstrated it dramatically one day. He was sitting on the floor with three toys in front of him. Initially he looked blank, not knowing what to pick up. One toy was removed and he still looked blank. Then another was removed, leaving one and immediately he appeared to recognise the last toy and picked it up. I think this shows that to this boy the world was cluttered and confusing and he needed it greatly simplifying. Once the number of objects in the scene in front of him were reduced he was able to make sense of it; he recognised a favourite toy. The young man later went to a special school for children with severe learning difficulties, where in my view there was a lot of visual clutter, and noise. I suspect that this did not help his learning. A common issue in special schools (see article on Minimalism).

 

 

How do  I know if my Child or a Pupil in my class is VIsion Impaired?

Some behaviours when occurring together 

can flag up a problem that is to do with vision. 

1. Close viewing - peering close to read
2. Head turning - turning at an awkward angle to look
3. Habitual clumsiness
4. Consistent off-task behaviour - misbehaviour can  be caused by lack of clear sight
5. Exceptionally poor spelling despite being an able reader
6. Regular careless miscuing of known words - reading words incorrectly 
7. Underachievement - especially when you  know  he/she is more able
8. Screwing up eyes in light
9. Consistent copying from a neighbour
10. Eyes that look crooked or misaligned like a squint
11. Eyes that look red or watery 
12. Eyes that move eccentrically - turn in or out
13. Difficulty looking directly at your face or eyes - this can be related to nystagmus
14. Lack of confidence in an unfamiliar environment like a new school or supermarket
15. Distress in a noisy, busy environment 
16. Covering one eye to look 
17. Turning head rather than moving eyes to follow a target

If you do think they have a problem seeing at all get their eyes checked by an optician or at A&E in an eye hospital.