Ranjana Pandey is the mother of Devika Pandey, a confident woman who knows her own mind. On Down’s Syndrome day, the mother recounts how her daughter, despite living with a condition, learnt to develop her own mind and the family’s pro active contribution towards it.
What is the kind of independence you encourage in your daughter?
To plan her day, to spend her time the way she wants to, to watch television, listen to music, choose her clothes, her style, her hair cut.
Unfortunately she was never allowed to go out on her own. The city (Delhi) is so child/woman un friendly, that even though Devika could have been trained to travel independently ( by bus when she was a teenager), we did not consider it safe. The metro came in too late for her. Her needs and life style had changed by then.
Is she happy to make decisions for herself or would rather you made them all for her?
Although she does look for validation on some issues such as re arranging her room, giving away some of her things- she mostly makes her own decisions and really sticks to them.
When she decided to resign from her first job - no one could convince her to go back or change her mind.The battle went on for a year- and finally we gave in.
The second job-like wise.
I rarely do anything for her without consulting her or taking her consent.
It took me a looong while to learn. I am still learning. And she has been teaching me consistently to trust her.
Since DS affects each person in different ways, what is it that you had to look out for most regarding your child: cognitive, behavioural or otherwise?
When Devika was very young, it was her personal safety. When she learnt to unlock and open the front door, she would run out of the house. She even ran away from home on her cycle with her back pack!You had to be very watchful.
As a child Devika suffered from horrific colds. Homeopathy pulled her out of this phase in a few years. She got gall stones and suffered a lot before her surgery.
Lack of socially appropriate behaviour (understanding privacy, polite behaviour) can be embarrassing for all.
Devika is high on emotional intelligence. She could always see through insincerity, or read people’s negative attitude towards her. She loves those who accept her for what she is- and to the others she can be embarrassingly rude.
But over the years you develop a thick skin. It really is the other person’s problem!!
How did you prepare your daughter to be an independent woman who can make decisions for herself?
The training for this starts in childhood. By presenting choices constantly - between two things so that Devika got used to making up her own mind, figuring out what she liked, what her preference was, what she wanted etc. If she made the wrong choice ( for some reason) you would have to convince her and explain to her why it was wrong.
A positive and accepting parenting gave her self confidence. Today she can look straight into a stranger’s eye and hold her own: "I am Devika Pandey. I am an artist."
The visitor would usually say "How wonderful".
To this Devika usually responds with a hearty "I am!"!!!!
What is your advice to other parents of DS children?
Trust in the ability of your child with Downs.They will surprise you again and again.
Don't make the mistakes I made!
Know that Structure is very important for mental stability and emotional health. So is companionship.
Adulthood brings its own set of problems.As their peers (and siblings) get married and have families, they naturally compare their own trajectory with that of the others. It can lead to depression.Frustration.Loneliness.
They can become increasingly stubborn. People with Downs develop a tendency to stick to a routine-a ritualistic sequence. It is their way of dealing with stress. Any change in the routine- or something new and unexpected is difficult to deal with. Try to prepare them with constant communication, repetition, say for an impending travel or shift of residence or even a simple change of plan.
Can your daughter offer her opinion on: 'What do I decide and what would I like to be able to decide'
Devika is quite philosophical.She has an opinion about many things.She definitely refuses to step out of the house these days. Even an exciting family holiday does not move her, nor does a visit to her favourite Chinese Restaurant!!
The reason she gives is " been there-done that".
I guess when you reach a mature age ( she turns 40 this week) you have to respect her opinion and just let her be....happy.
