11. EFFECT OF VISUAL IMPAIRMENT ON THE PARENTS OF THE VISUALLY IMPAIRED INFANTS
The earlier the diagnosis of vision impairment is made the shorter is the time when the parents enjoy the birth of their perfect baby and can fall in love with him or her. If the baby's condition requires immediate intensive care, the parents do not have the body contact that would help them to become attached to their baby. The way the diagnosis is told to them and the way the doctors and nurses handle the baby are also critical to the development of bonding between the parents and the infant.
The parents are the most important members of the early intervention team and thus should get all the support they need during the initial shock and during the ensuing months, which often are full of practical problems and worries about the future of the child. Their view of the situation is depicted in the picture drawn by Leena Herranen, mother of two children with severe vision impairment.
Assessment of visual functioning should be a calm, encouraging experience to the parents, at the same time realistic and positive. It is unfortunate that the clinical examination of young infants is so often taken care by residents who have very little or no experience of infant development and limited experience in examination techniques. Their evaluation of the situation is nearly always less optimistic than what is later found by the early intervention team. Support and assessment by the early intervention team often starts after some delay. Early intervention is rarely a part of clinical care - as it should be - but requires a referral to these services outside the hospital. Parents may not have the strength to contact the services during several weeks, sometimes months, at the most difficult time in the care of their child.
Poor eye contact is usually experienced as the most disturbing feature by the parents. They may not be able to specify what it is that makes them feel that the infant is not interested in them. Therefore the role of eye contact in early interaction needs to be explained repeatedly. The parents should be helped to notice their negative feelings and sadness when the infant does not respond like a sighted infant and to observe and correctly interpret the responses of a severely visually impaired infant who uses auditory information more than a sighted infant.
If interaction with an infant is difficult, it is avoided. The infant spends then more time in the crib than a sighted infant would spend, although (s)he should be more time with the parents than a sighted baby. Often a person who activates the infant, a therapist or an early intervention specialist is needed to show the parents how to communicate and play with the infant. If the acceptance of the situation is delayed, it affects the general development of the infant and the well being of the parents, sometimes leading to depression in both the infant and a parent, usually the mother.
Sadly often the father leaves the home, which may partly be related to our tradition of leaving fathers outsiders in early intervention. Since motor development is often delayed, teaching motor activities gives the father a special important role (see 'Dialogue with the dancing infant' Määttänen et al 1996).
Since the parents have such a central role in the development of an infant they should get more attention and proper care during the important formative years. Parents of healthy infants can become frustrated with seemingly minor practical problems. When infants require repeated hospital care, complicated care at home, like tube feeding or care of contact lenses, and do not reward the parents with normal interaction, their parents need a lot of support and practical help. Need of help does not decrease when the infant grows but continues until the parents have learned to know their child and have become special therapists and special educators of their child. In some cases this never happens. In such a case the infant/child needs support by a person who understands the effects of visual and other impairments on interaction and development.
Early intervention considers also the other members of the family and all other persons who take care of the infant. Involvement of siblings, grandparents, neighbours in the activation and support of the family is important through the whole childhood because several new crises will be met when the child grows. These should be noticed during later assessments and dealt with.
Each assessment should be seen as an assessment of visual functioning of an infant. The infant is a member of a family in a local society, which has its own cultural background and its own framework of values.