Multiple problems are more common in children with congenital visual impairment than in children who become visually impaired later in life. In different parts of the world 60–80% of vision impaired children have at least one other impairment or chronic illness. Some have more than four impairments, each causing disability. In most countries, visual impairment of multi-disabled children is not registered because only the “primary” impairment can be registered and that is usually intellectual, motor or auditory disability because they are diagnosed early. It is important to be aware of the variations of visual development in the groups of children with several impairments so that visual disability is not interpreted as a behavioral problem or an intellectual disability.
Better health care across the world has ensured greater survival rates for the premature and very low birth weight infants, children with syndromes, and those who have severe damage in accidents. As a result we see an increase in the number of children with visual impairment and additional disabilities, but neither medical nor rehabilitation services have received enough resources for intervention to enable better quality of life for all visually impaired children.
Children with multiple disabilities often have poor assessment and intervention because many practitioners find it hard to imagine the potential for development when they see the combination of several impairments. However, often infants, who did not seem to have almost any potential for development during the first few months, surprise specialists with their skills in many areas.
When assessing a child for the first time it is wise to ask the child’s therapist to start the testing so that the child gets an opportunity to hear the new voice without anything painful happening (as it was usual at the hospital). Infant’s own therapist can perform the first test situations, where she brings an illuminated ball (thin plastic ball on a penlight) from the side toward the mid-line to test the size of the visual or attention field. This infant responded only in the mid-line.
Here is the video from the testing situation:
Note in the video how the therapist is asked to bring the illuminated ball below the hands of the infant, first the better functioning hand then the hemiplegic hand, so that fingers on the ball create a grating pattern, an effective
visual stimulus. When the infant is getting accustomed to the new voice the doctor can go on with the assessment.
Since no accommodation could be measured, near correction was tried and the girl had a brief eye contact with the tester.
We learned more about the girl’s vision and capacity when her twin brother was examined. The girl showed very clearly that she was accustomed to be the center of attention and she did not like a situation, where the new person was playing with her brother. It was obvious that she had to be able to see and hear more than what the tests had shown; she had opinions and she could express her opinions. What else should a 5-month old infant be able to communicate?
The early activation and continuous support of visual development is especially important in all young infants with hypotonia or hemiplegic conditions. Infants with motor problems can develop their ocular motor functions better if they are included in physiotherapy.
Here is the video showing the child’s progress:
Ten weeks after the physiotherapy was started, this infant had learned to use her hemiplegic side quite well, played with both hands in the midline and had good visual communication with her therapist. Note that during this therapy session she turned from her back to her stomach for the first time when trying to get her favorite toy. Visual information was used to entice the infant to try a new motor function.
When her right eye started to become a lazy eye training was included in her physiotherapy. During training of the less functioning right arm, the baby held a toy and moved it in front of her right eye. The left eye was patched.
During therapies and the visits of an early intervention teacher/worker the use of tactile and kinaesthetic information should be observed to enrich information during interaction. The little hands should be given opportunities to explore faces. Father’s face is exciting to explore: in the morning before the father has shaved, his face can be studied in detail. Then when he has shaved one half of the face, the difference between the two halves of the face is investigated; the comparison is repeated when the other half of the face is shaved. This gives the infant much to ponder during the day until the father comes home, again a bit different. Mothers’ face never changes.
Many tests cannot be used exactly as designed. Some children cannot speak and will point with their eyes, head, hand or foot. Some children will need support for their bodies or head, help in bringing their hands forward or keeping their bodies relaxed in order to use their visual system. Other children will be able to give visual responses only when they are given adequate time and no disturbance of the other senses – no noise or touch. These needs vary from child to child and are learned through observation and conversations with those who work closely with the child. Changes in medication often affect children’s wakefulness and therefore parents should inform orthoptists and ophthalmologists about changes in child’s functioning.
Use of eye glasses
When near correction is found helpful, the use of eye glasses is started in communication situations and during therapy. If the side parts of the glasses are thin and don’t bother the infant during head movements, glasses can be used during the whole day. Since strabismus often develops in infants with brain damage, therapists can keep an eye on the infant and inform the ophthalmologist at the first signs of squinting (strabismus). Training of the less used eye can be included in the infant’s therapy.
When planning spectacle correction, it should enable the use of the best visual image at a distance relevant to the child. Spectacles known as reading correction for a very close distance is useful for tiny infants; an unusually long distance from the eye to the foot is necessary later for students who use their feet to type. We should consider also the typical position of the child’s head and use supports to maintain these positions when selecting spectacle frames. In many medical services children with intellectual disabilities do not get spectacles. Spectacle corrections are especially important for these children who have so few options for compensating the lack of spectacles. Finding the optimal spectacle correction is often challenging and requires thinking out of the box.
Spectacle corrections, when given, may not be accepted. There are several reasons. If a high minus correction is given as full correction, the dramatic change in the size of objects and distances may be too much to be tolerated. Hyperopic correction (= plus glasses) may be 1-2 dioptres over-corrected, sometimes more if the child’s visual sphere (cognitive sphere), within which the child can use vision is limited. It is then important to notice that when the child starts to pull the plus glasses away this can be due to an increase in the cognitive space and thus bifocal or monovision glasses may be needed (monovision = one lens is fitted for close distances and the other for distances up to a meter). The introduction of a spectacle correction may be easier if the infant has used empty spectacle frames first. Problems with glasses are individual; some children accept full correction of astigmatic error and spherical correction, some children do not.
Some infants with intellectual disability and myopia learn to use the “pin hole” effect to see clearly. They turn their head and look through the small hole created by the edge of the pupil and the corner of the eyelid. A small hole (pinhole) effectively compensates for refractive errors and gives a clear enough image for orientation. The child sees where to go and once close enough to the object can see it quite well because of myopia, nearsightedness. In cases like this, glasses may be acceptable only outside. This phenomenon is quite common in children with Cornelia de Lange Syndrome. If you have difficulty in believing this paragraph, make a small hole in dark coloured paper, take your glasses off if you need them to see at close distances or take “wrong” eye glasses that blur your vision and look through them and the small hole, keeping it close to your leading eye. You are likely to see enough to read, not as well as with your spectacles, but well enough to see many important details.
In the correction of refractive errors the functional visual sphere should be kept in mind and the spectacle correction fitted to function within that sphere. Distance glasses become useful only when the cognitive sphere of the child increases to include objects at greater distances.
If a child does not accept spectacles, all demanding tasks must be kept at the distance where the child sees best, and within the dimension of the uncorrected visual acuity for that distance. Families and caretakers should get information so that they are aware of this distance. In developing countries there are too many infants and young children with severe physical disabilities fitted with big and thick spectacle lenses that then press against the child’s cornea as these children spend most of the day lying on their side or back.
Visual stimulation as passive stimulation is appropriate when an infant/child is barely aware of vision. Once the response is obtained, the goal of intervention is to develop the child’s interest in actively using vision and a confidence in the vision as a source of information about the world. This is not learned through watching blinking lights in a dark room. It is learned by enabling the use of vision through the day in a variety of situations and for a variety of reasons – to better understand communication, to learn about toys, to understand information from other senses, to explore spaces and observe the effect of her actions on the world.