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Parenting with vision

Tue, 07/31/2012 - 10:05 -- admin

Though apprehension may be the first reaction to discovering that your child cannot see, positive parenting ensures that your child grows up with self-confidence and enjoys a good life. The family is a microcosm of the nation, and a well adjusted, confident visually impaired child at home will, in all likelihood, do well as an adult also, find out Naintara Jain and Anjali Sen Gupta

Often the very first challenge a visually-impaired person faces in our society is at home itself. Lack of awareness, uninformed traditional belief systems and little or no counselling opportunities make parenting a frightening prospect for parents whose children are blind or severely visually impaired.

Doctors and counsellors have the difficult task of breaking the news of a child’s vision impairment to the parents. “This is done gently but firmly to get the parents on track, guide them through the steps they must take to bring up their child,” says Sachu Ramalingam, Vision Rehabilitation Specialist at Dr Shroff’s Charity Eye Hospital, “so that the parents and the child see beyond the disability and concentrate on functioning as ‘normally’ as possible.” Most often, parents react with shock and despair, which is natural, but it is imperative that they act in time.

Vision rehabilitation must start as early as possible, and parents must be able to focus on the ‘how’ rather than the ‘why’. It is definitely not an easy challenge for a parent, and is complicated by inexperience in many situations. There are cases where the extended family -- grandparents, uncles, aunts -- advise the parents to let things be, to leave the child so that he or she can grow up normally. While it is important that the child learn on her own, expecting that she would do so completely on her own is wrong.

Such advice is counterproductive since vision impaired children are unable to learn like sighted children. These children do need special training as they are unable to perceive like sighted people. Infants learn many common tasks by simply aping other people, and so the simple act of even head-holding (for instance, what is meant by ‘straight’?) needs to be taught using special methods for a visually impaired or blind child. Early intervention can minimise or eliminate most learning gaps but must be provided at the appropriate time, not after learning problems occur. Vision stimulation in the early stages may help prevent milestone delays in the development of other body functions as well, since vision is the feedback system for all other developing systems.

For instance, Ms. Ramalingam explains, “A person with a 6/60 vision is legally blind. Such low or impaired vision could in fact be trained to provide functional vision, if provided effective rehabilitation.” She cautions though that, for many patients, it is not likely that vision can be restored, but with vision stimulation techniques a person can be taught to best utilise residual vision and enjoy a better quality of life. This includes providing people with skills so that they are able to read printed pages or computer screens, and perform daily activities with little assistance or even independently.

She herself was born with congenital cataract, but her energy is unwavering, and her independence has made her a strong individual who can assist and advise others. Armed with a Masters in Vision Rehabilitation, she meets every day head-on. Her parents had a similar condition as hers, and as a young girl she would often hear them weep at night. This made her determined to lead an independent and productive life. Sometime ago, after an incident which further damaged her 6-metre residual vision, she pushed and trained herself to see more, and soon could read the computer screen with her 1-metre vision.

What would be the emotional state of parents when they realise their baby has visual impairment, and they can do nothing about it? There have been instances when the family has reacted with anger towards the child, thinking that the child is a burden on the family. “One family stopped functioning in a normal manner; they stopped going out, not even to the movies or on holidays. Such behaviour is counterproductive.” In another instance, a visually impaired girl [name withheld] was eager to learn, pushing herself to perform, while sometimes the family would despair. They would say: “How can you do that? You can’t see.” The child and the counsellor, however, persisted; now she goes to a mainstream school and is doing very well.

The family provides the foundation on which a visually impaired or blind child builds a successful life. Compassion and caring provide the critical healing touches. Vibhuti was operated upon for congenital glaucoma three days after her birth. When she was 10 years old, her retina got detached when her teacher slapped her at school. In the blink of an eye, she became visually impaired. She had to undergo multiple surgeries. Vibhuti’s parents came to Dr Shroff’s Eye Hospital for consultations; with loving care, proper guidance and rehabilitation, she now leads an independent lifestyle.

It is agonising for parents to come to terms with their child’s disability. But come to terms they must, and treat it as another challenge to overcome.

Manjula Mahajan’s twin girls -- Prachi and Pragya, each weighing merely 1,200 gm -- had to be put in neo-natal care immediately at birth. The Mahajans’ primary concern in the initial months was to try to keep “these very fragile babies alive and well”. It was only six months later that they noticed a lack of response, and constant eye movement, in the twins. When they took the babies to a doctor, Ms. Mahajan went in first with one girl while her husband waited outside with the other. After his examination, the doctor asked, “Kya doosrey ko bhi nahin dikhta?” [which translates to: Is the other one blind too?] The possibility that their babies couldn’t see had not even remotely occurred to the parents. Their first reaction was shock, and they thought “Why us?” The twins were diagnosed with Retinopathy of Prematurity (R.O.P.).

The Mahajans tried to find out about other children with a similar condition, so that they could talk to those parents about what to do. The doctor knew about one boy, but his parents had taken him to America for treatment and had had no results.

Then the Mahajans learnt of Sankara Nethralaya in Chennai. There, they were informed that the retinal nerves had not been fully formed, and that the chance of recovery was poor. The Mahajans, hoping for “sight for one of the four eyes”, opted for surgery, but their daughters still could not see.

It was quite by chance that Mr. Mahajan, driving through Delhi’s R.K. Puram colony one day, saw the board for the National Association for the Blind (N.A.B.). The Mahajans found guidance there; the girls were taught to crawl and learn other basic activities. They then took the girls to the N.A.B. every few days and also followed the instructions given by the Association at home too.

It is very important that parents seek guidance and rehabilitation for their child even with ongoing surgical treatment. There are instances when parents are so involved in seeking medical treatment that they neglect the early training aspect of the child. In such cases, a 10-year-old visually impaired or blind child can grow up lacking basic functional abilities that a child of three would have. There is always the chance that surgery may not always be successful, and may further damage the residual vision. In addition, for many surgeries, timing is of the essence.

Another child who has benefited from positive parenting is Kartik Sawhney. He has no trouble socialising with people and enjoys a good conversation; he is learning music, and his energy and enthusiasm are unrelenting. At school, he’s a computer whiz, and at home he’s a regular grandchild, bringing a glass of water for his grandparents or taking inkjet print-outs of bhajans [religious songs] for his grandmother. Computer technology occupies a large part in his life; he uses it for his school work, for language lessons, and even interacting with other people in forums.

Kartik’s grandfather is very appreciative of the N.A.B.’s support, where the boy went to school. The Association recognised Kartik’s potential, gave him access to computers and later a private tutor. Now the N.A.B. even gives an honorarium to Kartik to be a Resource Person for the organisation.

Prachi and Pragya, like Kartik, went to the N.A.B. regularly, learning Braille and math, among other things. After Class 1, their parents were keen that the twins go to a regular school. So the girls began their education at Springdales (in Delhi) which took the kids in on the condition that someone from the family be present while the kids are at school. That someone is Manni, who accompanies the girls to school. Manni learnt Braille, and looks after the girls.

Once the girls started going to a ‘mainstream’ school, their parents realised how hostile and unaware other people could be. At a parent-teacher meeting, some parents objected to their kids learning alongside the visually impaired twins. Ms. Mahajan happened to be present at this meeting and wept when she saw such hostility. A Springdales teacher, however, assured her that there was no need to worry; the school would make no such distinction. The twins use a computer at school to assist them with schoolwork and homework. Ms. Mahajan insists that her children participate in school activities, and the children are involved in the Sports Day and annual functions as well as other activities.

Kartik’s mother too is actively involved with her son’s daily routine. She goes to his school (the Delhi Public School, East of Kailash, Delhi) and sits in the library copying homework to be done. She returns with him in the afternoon. Accompanied by his mother, Kartik goes to birthday parties, singing auditions, performances and other activities. He is talented and gets a lot of attention in different forums, and the family is justifiably proud.

Parents should not give up when they need to be consistent; they must maintain a positive attitude and take affirmative action. It is poor parenting to simply ‘dump’ the child into a segregated school or hostel for blind people -- such a sequestered child will have a lot of trouble adjusting to life around ‘normal’ surroundings at a later stage. A child with partial or residual vision must be taught to process the partial information for complete perception. Sometimes, financial limitations are often cited as a reason for the inability to take the necessary steps to equip a child with the necessary skills, yet it is usually educational and attitudinal factors which lead to a poorly developed child.

Sanjay Dang is an example where a positive attitude did, and still is, making a difference to the quality of life. Brimming with positive energy, 38-year-old bachelor is a leading entrepreneur in Delhi's tourism industry. He has made dreams for innumerable clients come true by selling to them beautiful and exciting travel destinations. His clients do not seem to notice or care about the fact that this highly successful travel entrepreneur has vision impairment.

He did not have any serious visual challenges during his school years; he had high myopia and wore glasses. It was only after Class 10 that his sight worsened and he was cautioned that he must take care to avoid damaging his retina. To avoid retinal detachment he took steps to ensure that he did not suffer any violent jerks, for instance, he avoided travel by public transport.

He recalls his school days as being fun. He studied in a mainstream school. "Despite my limited vision, childhood for me was absolutely normal and conventional. Along with my younger siblings -- a brother and a sister --I did my schooling at the Army Public School, New Delhi and, later on, Kendriya Vidyalayas in Barielly and Dehradun," says Mr. Dang.

At school, since sports was off limits for him, he turned his attention towards cultural and extracurricular activities. He won awards in various cultural events, such as dramatics, and also contributed regularly to the monthly school magazine. He was very active in inter-house activities too, being in-charge of the House News Bulletin Board. He completed his college studies through correspondence

But were there moments of doubt, when his peers or family members became concerned about his vision impairment?

"It is human nature. A lot of parents and families become over-concerned because of the vision impairment of their children. However, if they try to identify areas or faculties in which their children show talent and inculcate confidence in them as well as create an environment where these talents can be nurtured, there is no reason why they cannot perform better than others," he says.

Prachi and Pragya, for instance, pick the clothes they want to wear; they decide what colour they want to wear. They dress themselves with little help, and Velcro on their shoes enables them to put them on easily. The kids tell the time using a talking clock and assistive wrist-watches. The parents take the girls on trips and holidays. They will start their mobility training with a cane soon.

Ms. Mahajan also instils in her daughters values like taking care of parents when they are old. She tells them that they must look after their parents in later years, and to be able to do that the girls must be strong and be qualified and earning for themselves and their families.

There is thus a strong argument for parents and counsellors to focus on including visually impaired and blind children in regular life, providing them the training and opportunity to use their abilities to their optimum level. The role of counsellors such as Ms. Ramalingam is to get children into the mainstream, after which other support systems begin to play a part. Yet, the role of counsellors is often extended, sometimes listening to parents’ troubles, dealing with irritable and hostile parents. (Counselling sessions are provided by Dr Shroff’s Charity Eye Hospital thrice a week for about 45 minutes, and the sessions go on for about three to eight months.)

In fact, nowadays, the task of a vision rehabilitator is not limited to training vision impaired children; increasingly, the cases that come to counsellors are of children with multiple disabilities. Genetic mutation, lifestyle conditions, stress or poor neo-natal care are some reasons for such cases.

“Action and education are the key to parenting a visually impaired child,” asserts Ms. Ramalingam. “If not equipped with proper functional training, the child has a passive and unrealised life.” The family is a microcosm of the nation, and a well adjusted, confident child at home will, in all likelihood, do better as an adult later in life.

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