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My voice heard: the journey of a young man with a cerebral visual impairment.

Abstract: This longitudinal case study presents John's journey through childhood and adolescence, living with visual difficulties associated with a cerebral visual impairment. It highlights the day-to-day problems that John encountered, giving practical solutions and strategies that have enabled his dream of going to a university to be realized. John and his family are an inspiration.

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The classical model of the human visual system is that of visual information being transferred from the eyes to the occipital cortex (Brodmann's area 17), where the picture is "seen." Damage to parts of the brain that are responsible for vision causes reduced visual acuity and impaired visual fields (Good et al., 1994). However, additional impairment of higher visual processing is common and may not be recognized (Dutton, 2009; Macintyre-Beon et al., 2010).

Cerebral visual impairment

Cerebral visual impairment (CVI) is now the most common form of visual impairment in children in the developed world (Fazzi et al., 2007; Flanagan, Jackson, & Hill, 2003; Good, 2009; Good et al., 1994; Gronqvist, Flodmark, Tornqvist, K., Edlund, G., & Hellstrom, 2001; Jacobson & Dutton, 2000). CVI can result from any cause of brain damage, with symptoms occurring in different combinations as dictated by the underlying brain injury (Dutton, 2003). The human visual system allows us to recognize and understand what we see, at the same time as it allows us to move through the visual scene without bumping into anything. Studies have shown that it is divided into two principal systems, one that brings about recognition--the ventral stream--and the other that subconsciously appraises the entire scene and brings about visual guidance of movement--the dorsal stream (Goodale & Milner, 1992; Ungerleider & Haxby, 1994). The ventral stream runs from the occipital lobes, which are responsible for the primary analysis of the image, to the temporal lobes, where the image data of previous experiences are filed, akin to the storage computer of the Google search engine. We recognize what we see because it matches the stored image data. What we do not recognize we store for future recognition. The dorsal stream runs between the occipital lobes and the posterior parietal lobes. This part of the brain functions subconsciously and immediately and contributes to bringing about visual guidance of movement. It has the function of appraising the whole visual scene to facilitate visual search (Goodale & Milner, 2004; Milner & Goodale, 1995).

Faces can be recognized in different orientations and at different distances, and we even correct for aging by means of ventral stream function. At the same time, the dorsal stream facilitates our movement through three-dimensional space. The posterior parietal cortex serving the lower visual fields and dorsal stream has been shown to be involved in visual spatial working memory (thus, damage to this area could result in difficulty constructing three-dimensional images). This description of how the visual system works provides a simplified but practical model of thinking, recognizing that there are many other pathways in the brain that serve the wide range of higher visual functions (Goodale & Milner, 2004; Milner & Goodale, 1995).

Damage to the ventral stream leads to an impaired ability to recognize faces, words, or objects, which may be associated with great difficulty with finding routes. Damage to the dorsal stream leads to a different set of problems. Holmes (1918a, 1918b) presented an early detailed account of profound dorsal-stream dysfunction. He gave a graphic account of the effects of shrapnel wounds to the posterior parietal cortex bilaterally in six combatants in World War I. In brief, despite having intact visual acuities and stereopsis, five of the soldiers had sustained lower visual field impairment. Moreover, all were totally unable to use vision to guide movement (optic ataxia). They also had a profound inability to see more than one or two images at once in a crowded scene (simultanagnosia).

More recently, a number of reports have shown that dorsal stream dysfunction may well be common in children (Dutton et al., 2004; Fazzi et al., 2004; Fazzi et al., 2009; Saidkasimova, Bennett, Butler, & Dutton, 2007; Stiers & Vandenbussche, 2004; Stiers, Vanneste, G., Coene, S., & Vandenbussche, 2002), including those with cerebral palsy. Bilateral damage to the superior posterior periventricular white matter causes the same complex of symptoms as that described by Holmes (1918a, 1918b), but to a less severe degree. The causes include periventricular leukomalacia; hypoxic ischemic encephalopathy (Good, Jan, Burden, Skoczenski, & Candy, 2001); hydrocephalus; trauma to the head (both accidental and nonaccidental) (Barlow & Minns, 2000; Billmire & Myers, 1985; Morad et al., 2002); and infections, including meningitis, encephalitis, intracranial aneurysms, neonatal hypoglycemia, and maternal infections (Back, 2006; Dutton et al., 2004; Fazzi et al., 2007; Ferriero, 2004).

Affected children commonly have impaired lower visual fields in both eyes, impaired visual guidance of movement of the arms or legs or both (optic ataxia), and difficulty finding things when there is foreground or background clutter, and they may have difficulty appreciating movement. Impaired attention, particularly when the left side of the visual scene is affected by damage to the fight side, can be evident in children with dorsal stream dysfunction when there is asymmetry in the underlying pathology.

Since these problems are due to the dysfunction of a set of subconscious brain functions and are present from birth, they may not be "symptomatic" because being symptomatic requires a conscious awareness of the difficulties that are being experienced. Yet parents give a highly consistent and reproducible history that frequently allows the site of the pathology to be accurately predicted (Drummond & Dutton 2007). CVI has been reported in ex-preterm children (Dutton & Jacobson 2001; Jacobson, Flodmark, & Martin, 2006); in premature neonates, especially those with a gestational age of less than 32 weeks, periventricular white matter change of prematurity is the primary cause of axonal damage affecting the higher visual pathways (Fazzi et al., 2004; Jacobson & Dutton, 2000).

Children with dorsal stream dysfunction may have a poor attention span or concentration (McKillop et al., 2006), which can result in difficulty performing more than one task at a time and extreme frustration when distracted. In addition, children with CVI may have visual inattention (McKillop et al., 2006). Although these children appear not to see part of their visual field, there is no evidence of a corresponding visual field loss. Such behavior is indicative of visual inattention, including writing on only one side of the page and bumping into door frames. Inattention to the left side occurs most frequently and is thought to be due to fight brain dominance for visual attention (McKillop et al., 2006).

To aid the diagnosis and planning of management of dorsal stream dysfunction, our team developed the Cerebral Visual Impairment Question Inventory (Dutton et al., 2010), which includes many of the common symptoms and signs. It can be used to aid the taking of a structured clinical history and can be sent to parents before they attend a hospital clinic appointment, where it can then be used to discuss areas of concern for parents and their children. It is important to recognize that the document is not a questionnaire, but a list of questions that provide a means of identifying and seeking solutions for the visual difficulties that arise from perceptual and cognitive visual dysfunction.

Case report

John is a 19-year-old young man with visual difficulties that are typical of both dorsal and ventral stream dysfunction. He was born at 29 weeks gestation by an emergency caesarian section because of maternal pre-eclampsia, reduced fetal movement, and severe retardation of intrauterine growth. At birth, John weighed 780 grams (an extremely low birth weight). He required immediate intubation and assisted ventilation; his neonatal course was complicated by respiratory distress syndrome, pulmonary hemorrhage and pneumothorax (day 2 of life), bronchopulmonary dysplasia, and gastroesophageal reflux.

MEDICAL AND OPHTHALMIC HISTORY

John developed diplegic cerebral palsy, more marked on the left side, and received a combination of physiotherapy, botulinum toxin, and surgery to correct his extensor posture and improve his gait, followed by a six-week block of mobility therapy with Bobath Scotland. At age 3, he suffered his first febrile convulsion, which was thought to be secondary to a viral illness, and continued to have nocturnal seizures associated particularly with long car trips. At age 12, he was prescribed Nitrazepam to use before bed or after a long journey.

John did not develop retinopathy of prematurity. At 6 months, his eyes were noted to be healthy, with clear media, normal fundi, and no significant optical error. However, by age 11 months, he was noted as having an alternating convergent squint, eyes turning in when they should be looking straight ahead. Three months later, John had surgery to correct this squint, comprised of bilateral medial rectus muscle recessions. John's eyes were checked regularly, and at age 9 he was found to have a bilateral lower visual field impairment and to be slightly farsighted (hypermetropic), which is more prevalent in prematurely born children (Larsson, Rydberg, & Holmstrom, 2003) and does not require spectacles.

At age 13, John was experiencing difficulty at school, particularly with mathematics and mental arithmetic. After he was referred to the neuro-ophthalmic clinic at the Royal Hospital for Sick Children, Yorkhill, Glasgow, structured history taking identified that John had difficulty negotiating obstacles; he would frequently trip and could not judge the height of a step. John was also found to have difficulty identifying an individual person from a group, recognizing an object pointed out in the distance (the farther things are away, the more there is to see and the more complex the visual scene), recognizing complex shapes, copying information, and representing a three-dimensional shape on paper. These features can be attributed to disordered visual perception, affecting both the dorsal and ventral streams.

The inside story

In this section, we present a representation of life with CVI--the practical problems faced every day and solutions or strategies that have been helpful. In this regard, we interviewed John and his mother, thus gaining information above and beyond that recorded in the case notes. We interviewed John at both 16 and 19 years. John remains farsighted; his distance visual acuity with both eyes open was 0.150 (Snellen 20/25) if measured using a crowded logMAR chart at 3 meters (about 10 feet) and 0.025 (Snellen 20/20) if measured using an uncrowded logMAR chart at 3 meters (about 10 feet). His near visual acuity was measured at M0.50 with refraction, in both the left and right eyes; this measurement lies within the normal range (Myers, Gidlewski, Quinn, Miller, & Dobson, 1999). Contrast sensitivity, measured using a Pelli-Robson chart at 1 meter (about 3 feet) was 1.75 (right eye and left eye and both eyes open). This measurement lies slightly outside the normal range of 1.80-1.95 (O'Connor et al., 2004). There was no evidence of stereopsis, which was assessed using the Frisbee test. John's peripheral visual fields were plotted using Goldmann visual field equipment (see Figure 1 for the left eye and Figure 2 for the fight eye) with 14e and 12e isopters. John said that as far back as his early school days, he did not know where to start writing on a blank piece of paper. Left to his own devices, he would write on only half the paper, starting in the top fight corner (see Figure 3). To deal with this problem, Strategy 1 was developed with John, which he found helpful throughout his school years (see Table 1, which outlines the strategies that John has used and rated according to how helpful they have been for his day-to-day activities).

Copying from the chalkboard in the classroom was difficult for John throughout his school years. The act of copying information from a chalkboard to a notebook is a complex task requiring word recognition, a competent visual search, and visual memory. Each word or group of words to be copied must be found on the board. Because the dorsal stream is involved in the process of perceiving objects simultaneously, damage to this part of the brain can make the location of a word or group of words to be copied difficult. Once located, the word or group of words must be remembered for the time required to write it down. Visual memory may also be impaired in CVI (this is part of the ventral stream); thus the image can be forgotten before it can be transferred. Finally, one has to find the correct place on the page onto which he or she will copy the word, which again requires a visual search. John has found that the use of a laptop is the most effective way for him to display information, such as when answering questions in examinations.

[FIGURE 1 OMITTED]

Artwork, particularly working with three-dimensional shapes, is difficult for John. Measuring angles using a protractor has been a problem for a variety of reasons, including difficulty recognizing the angle to be measured owing to impaired ventral stream function, difficulty aligning the protractor with the angle to be measured secondary to impaired visually guided movement, or difficulty reading the instrument because of visual crowding.

John finds it difficult to retain numbers in his head during calculations. As we noted earlier, short-term visual memory can be impaired in CVI. Finding his place in calculations can also be a problem.

[FIGURE 2 OMITTED]

John finds cooking difficult, since a number of tasks that are involved in the preparation of food are hard for him to carry out:

* Grasping an object. He may grasp thin air because he is unable to locate the object in space accurately.

* Straining food (such as pasta). He can miss the colander and spill the food.

* Difficulty pouring. He misses the receptacle.

* Difficulty judging when a cup or jug is full.

* Placing a plate on the table. He often puts the plate down before it reaches the table, hence smashing the plate on the floor.

[FIGURE 3 OMITTED]

Many of these problems appear to have a common origin, namely, an impaired ability to locate an object accurately in space. The dorsal stream interacts with the motor cortex when one plans visually guided movement. Thus, damage to the dorsal stream can cause a disruption in finding and accurately reaching for and grasping an object using visual guidance. In John's case, it is likely that a combination of impaired visually guided movement of the arm, the lack of stereopsis, and constricted visual fields contribute to the difficulties he has accurately grasping an object. Most important, the problem, whether from a single or multiple pathologies, can be alleviated by using touch to provide tactile guidance to consolidate the frame of reference in the mind for where things are located.

John described difficulty estimating the height of changes in elevation, for example, when leaving a curb to cross a street. The combination of optic ataxia of the legs, a visual field constriction, and the lack of stereopsis renders the task of negotiating steps and floor boundaries difficult. Escalators cause a particular problem. Impaired visual perception of movement can occur in dorsal stream dysfunction. Hence, the moving steps may be poorly perceived, the height of the steps poorly judged, and the ability of the legs to find a step in space diminished, making this an extremely challenging task.

Children with dorsal stream dysfunction may have impaired attention. John finds that he is easily distracted and chooses to sit at the front of the class on his own during lessons. In all environments, John finds it difficult to find an object from a cluttered background, whether a word on a chalkboard (as was mentioned earlier), a word on a page, or an object on a patterned bedspread.

John acts as a judge at national and international gymnastic competitions. When he participates in gymnastics himself, he finds rings and the high bar most enjoyable because, he believes, the physical demands are less than with other apparatuses. Also of note is the fact that both rings and the high bar involve almost constant contact with the apparatus. Using touch and proprioception, John knows where he is in relation to the apparatus. But damage to the dorsal stream and the resulting optic ataxia render it difficult for him to locate an apparatus he is not touching; he described the vault as a difficult apparatus for him because he does not "know" where the springboard is.

John has good visual acuity, yet he has problems with many "visual" tasks. With the correct identification of the problem and implementation of the strategies described in Table 1, John's problems have been reduced, allowing him to continue to develop in all areas of life. Undoubtedly, his family has supported John and worked with him to overcome his difficulties.

Implications for educators

One of the most thought-provoking statements John made during the interviews was "the school must understand." John described how his experience at school had altered dramatically from school to school and among teachers. The event of a new teacher or school often heralded a step backward only because the new members of the staff did not know him or understand his difficulties. The transfer of information to educators via a letter from the appropriate ophthalmic team has helped inform the educators in this story. Ideally, this process should become a two-way dialogue allowing an understanding of the underlying visual difficulties and discussion about which strategies are most effective for the individual child. Indeed, the potential benefits of information sharing are great, and information could be shared in a variety of different ways, including workshops, seminars, and team meetings related to individual children.

Conclusion

John's case demonstrates that once the specific visual difficulties that are consistent with dorsal and ventral stream dysfunction have been correctly identified, simple strategies can be used to "transform" the lives of children with these visual difficulties and their families.

To gain an understanding of the impact that these strategies have had on John's life, we asked how helpful he found them; his answers are displayed in Table 1. Some of the strategies John listed as most helpful were those related to navigation around unfamiliar places. John rated Strategies 10, 11, and 12 as "very helpful." These strategies aim to help people augment their vision with alternative sensory information, such as tactile input about the position of a step or curb gained by feeling for it with one's toe.

At age 19, John is well adapted to his disability. He emphasized the importance of knowing what one is capable of and accepting help that is offered. He is well educated about where he can get help and ensures that he receives what he requires. Through the disability service at the university he attends, he has been given a scribe for lectures, access to a laptop with an audio notetaker and speech recognition software, a dictaphone, enlarged examination papers, extra time to complete examinations, and the use of a computer during examinations. With these provisions in place, John achieved academic success in his first year at the university.

Understanding can allow for a change in attitude of everyone who is involved in a young person's development, from parents to teachers to peers. Thus, a young person will no longer be criticized for being clumsy and unable to find things, but will be understood and helped.

Editor's Note: The first author of this article is the developer of LiveDescribe, which is discussed in this article. Readers should note that the Journal of Visual Impairment & Blindness does not endorse products that are mentioned in the journal. Authors' Note: Funding for this research was generously provided by Canadian Heritage, the CCOP program, the Natural Sciences and Engineering Research Council, and the GRAND National Centre for Excellence. Many thanks to Lisa Copeland and Ryan Farnum for their technical and editing skills. Finally, we gratefully acknowledge all the people who participated in the Phase 1 and 2 studies.

References

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Catriona Macintyre-Beon, RGN, RM, MBA, visual impairment clinical specialist and research fellow, Department of Ophthalmology, Royal Hospital for Sick Children, Yorkhill, Glasgow, G3 8SJ, United Kingdom; e-mail: <cmacintyre-beon@ nhs.net>. Kate Mitchell, MBchB, research assistant, Department of Ophthalmology, Royal Hospital for Sick Children, Yorkhill, Glasgow; e-mail: <katemitchell @ doctors.org.uk>, fan Gallagher, Department of Ophthalmology, Royal Hospital for Sick Children, Yorkhill, Glasgow; e-mail: <ian. gallagher27 @ntlworld.com>. Debbie Cockburn, M.Sc., specialist occupational therapist, Department of Ophthalmology, Royal Hospital for Sick Children, Yorkhill, Glasgow; e-mail: <debbie. cockburn@gcu.ac.uk>. Gordon N. Dutton, M.D., honorary senior research fellow, University of Glasgow; mailing address: 45 Station Road, Milngavie, Glasgow, G62 8BS, United Kingdom; email: <dutton@duttonhome.com>. Richard Bowman, M.D., consultant ophthalmologist, Great Ormond Street Hospital, 34 Great Ormond Street, London, WCIN 3JH, United Kingdom; e-mail: <BowmaR@gosh.nhs.uk>.
Table 1
Strategies that John used throughout adolescence, with ratings of
how helpful he has found them.

Strategy
number                  Strategy                      Rating

1          Use a brightly colored dot at the top   Helpful
             left corner of the page.
2          Use a scribe.                           Very helpful
3          Use a laptop and digital camera.        Very helpful
4          Use an enlarged protractor.             Very helpful
5          Use squared paper for mathematics.      Very helpful
6          Cook food that needs to be drained in   Very helpful
             a basket.
7          When pouring liquid, tilt the two       Helpful
             containers toward each other.
8          Listen to the noise of a cup or jug     Very helpful
             filling.
9          Wait until you feel the table with      Helpful
             your hand before you put a plate
             down.
10         Feel for the edge of the curb with      Very helpful
             your toes.
11         Use the handrails on a staircase.       Very helpful
12         Use a "look, check, go" approach when   Doesn't really
             navigating, especially in new           use
             places.
13         Seek help when getting off a train or   Helpful-easier to
             bus.                                    use if you are
                                                     traveling with
                                                     people you know.
14         Use an elevator.                        Very helpful
15         Practice the use of an escalator.       Helpful
16         Minimize clutter.                       Very helpful
17         Enlarge text.                           Very helpful
18         Ask the instructor to stand by the      Very helpful
             springboard.
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Article Details
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Author:Macintyre-Beon, Catriona; Mitchell, Kate; Gallagher, Ian; Cockburn, Debbie; Dutton, Gordon N.; Bowma
Publication:Journal of Visual Impairment & Blindness
Article Type:Clinical report
Geographic Code:1CANA
Date:Mar 1, 2012
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