Journey of Parents...

JOURNEY OF PARENTS - IN THEIR OWN WORDS...

Sreekant's Journey...

Sreekant reflects on his experiences in bringing up his son with cerebral palsy…

“Your child has a problem.” With that one sentence, the doctor forever sets you apart from your friends and family. As parents you grapple with what your child’s disability means. Your concerns are no longer those of parents with normal children. You and your child inhabit a different world. Try as they might, even your closest friends can’t seem to fully understand the shadows that flit over your world. To be fair, maybe you can’t quite understand the world of their children either. They drift away.

Over the years, maybe you will find peace as well as some of those lost friendships. But you have already been denied something that most parents take for granted: that is, to learn from the experience of others how to bring up your own children.

You don’t know anybody else with a disabled child so who can possibly help you figure out parenting? ‘Disability’ is a catch-all word. From hearing loss to eyesight failure to speech impairment to autism, everything is a ‘disability’. But even within a single condition, say, cerebral palsy, there are wide variations from case to case. Parents can’t easily find somebody with a child whose problems are similar to their own.

If you can’t learn from the experience of either your friends or of your own parents or elders in the family, who can you possibly learn from? It is for this reason that information disseminated by NGOs becomes so critical.

This is especially true in a country where the health infrastructure provided by the state is extremely basic. There is little help from the state for the disabled. The family has to deal with disability entirely on its own in every way.

Three factors will determine how the child will fare in his reduced world.

The first is the attitude of the parents. If the parents love the child without inhibition, the child has a fighting chance to be happy in his or her small world. If the parents stand by their child, the extended family picks up its cues accordingly and will treat the child right. If they see reservation in the parents’ eyes, their attitude to the handicap changes.

The second factor is whether there is an extended family to offer support. An accepting joint family can be a huge help. If, on the other hand, it is a nuclear family, bringing up a severely disabled child can be an extended grind since there is no relief in sight for either the child or the parents.

India is a country of disparities and yet examples of people born in poor families who have done well abound. Alas, this is not possible if a child is disabled. In fact, the additional medical and support expenses could pull the family down economically.

This brings me to the third point in determining a child’s happiness: money. Having a little less of it may not make a huge difference to a normal child; for a disabled child, it can be critical. Not just for medical care, it could even determine whether or not he or she can move out of home. Without a family vehicle, for example, a physically affected child could effectively become imprisoned inside the house.

The family is the main support mechanism for a disabled child. But the parents themselves need help to deal with the situation. The right information is in short supply. India needs literally thousands of NGOS which can help parents deal with their own special reality.

Rajeshwari's Journey...

Rajeshwari reflects on her journey in bringing up her son with Dyslexia...

This is Rajeshwari. I am sharing my experience of bringing up my child with dyslexia, who today is a professional, working with a MNC.

He was born in Chennai.

His schooling started at around the age of 3 years at a prestigious institution , known for value education. I had the privilege of meeting the head of institution, a true educationist. My son refused to answer the questions/test, but the great lady allowed the child to be himself for a while and observed him without saying a word.... and granted admission.

During those pre-KG days, we never tried to teach any syllabus at home and probably this was one of the reasons , he felt lost in the classroom.

When he was about 5 years old, we moved to Delhi and a new school. The change of place, new language aggravated the underlying problem. He was admitted to 1st grade as per his age, but after 6 months, one teacher (she also had a child with dyslexia , who is a mechanical engineer now )suggested that we get our son assessed for reading and writing skills.

The result was a blow to us, it was confirmed that the child's performance was below average for his age.

This was also an eye-opener for us, that however qualified the parents are, their child could face a difficulty like this. It was hard to believe that our son was a mild dyslexic, a child who could play Chess, talk in three languages, play musical instruments and most of all, converse with maturity beyond his age !

Schooling was at grade appropriate level, but I could see that he was struggling to cope. Remedial teaching ( English language) was started immediately and I had to keep aside my priorities to devote time to him. As for the teachers at school, it was a mixed bag. Those who understood the child's problem allowed him to work at his pace, and for the rest, I had to meet them atleast once in a month to explain his challenges and discuss what we could do.

Not much was achieved at school even at the IV grade level. Remedial teaching continued throughout the year with the special educators and we arranged for extra coaching at home for other subjects, taking care to select the tutors who had patience !

As the child grows, the peer-pressure and the social circumstances result in issues like inferiority complex, behavioural aspects, etc., It is very important for the parents to handle all these with care.

He changed school again in Delhi, a school with ideas on holistic learning and a wider berth for children who were not able to achieve and match their potential.

But here too, we could not get the necessary essence/inputs that we were looking for.

It's very important for me to mention here that children with Specific Learning Disability find it a bit difficult to fit into the regular academic group but they cannot be clubbed with other differently-abled children. So , any school with the ideology of value-education, finds it difficult to cater to this group, unless there are sufficient numbers to justify a separate class room or different teaching strategies.

My son was going to be 12 years old and no academic improvement could be seen. Every day was a struggle. Weekends were study-free, to ease the pressure. Schooling had become the biggest worry. By then we had heard about this one particular institution in Chennai, catering to children with learning disability. I attended seminars conducted by them, about new and innovative teaching methods and understood the methods they used. It was decided that my son and I move to Chennai to complete one level of schooling. it was a difficult decision. He would miss his father and I would have to handle many more responsibilities. But our focus was to get the best possible tutoring , which would enable the child to cope up on his own in the coming years.

This school in Chennai had everything that we were looking for, right from academics to the physical and emotional well being. Yoga and meditation were part of the daily schedule. It was an answer to our prayers. The curriculum was NIOS( open schooling system with optional subjects) and my son could attempt to write 10th standard examination at 15 years of age.

He was about 13, so he was admitted to 9th grade, per se, adjusted well to the school and the teaching. I could see the difference in his mannerisms and behaviour within six months of being there.

2006 was a benchmark year. He cleared his core subjects of Commerce and English with flying colours.

Imagine our state of Euphoria! A child who could not comprehend and write 6th standard CBSE subjects two years ago, cleared business maths, and other six papers in one-time attempt. By the way, NIOS syllabus is as extensive as ICSE, mind you! Kudos to the teachers at the organisation at Chennai, and in particular to the founder Director and back bone of the institution.

Mid 2006 brought another change. My son continued his 11th standard at another institution in Bangalore. This place offered a choice of State board, CBSE and ICSE all under one roof . Also, he had to stay in the hostel as I had to accompany my husband on an overseas assignment. Not an easy decision again, but our son had to learn to live independently to face the world. He successfully cleared the exams and got admission to complete his graduation in Commerce. Needless to say, there had to be lot of monitoring and extra coaching that made him clear his exams in one-go.

He was a young adult now, and we treated him like one, talking again and again about his future and how he can be successful by planning and acting on that to reach his goal.

This emotional support from the parents made him work tirelessly . His admission to the Masters degree program through merit for AIMA (All India Management Association) says it all.

The Convocation day of August, 2018, is the most memorable day of my life.

Today, he is working as a HR Professional with an international firm.

As a mother, all I can say is, nurture the child with the best possible support, taking care to be empathetic, firm and understanding, as the situation needs. Best wishes to every parent in this endeavour...