Shalini Gupta talks about her teenage daughter Gayatri, a person with Down’s Syndrome, who has grown up to be an independent young lady because her parents have always given her freedom within limits, something that Gayatri has learnt to appreciate. Gayatri is also an avid and a successful photographer.
What is the kind of independence you encourage in your daughter?
Gayatri is a teenager at 18 years of age. But boy, is she independent!! Most people who get to know her understand what a fiercely independent young lady she is turning out to be. This is not to be confused with the headstrong behaviour observed by many parents of youngsters with Downs. Instead, Gayatri is a person who has gradually learnt the spheres in her life where she can take decisions completely independently, those where she needs to cross check with an adult in the family and then those in which she has to toe the line.
As parents, we have looked at helping Gayatri be independent on various fronts –
- At home – she is able to organise her favourite foods from the kitchen cupboards and refrigerator, prepare tea and coffee, bake her favorite cakes and bread (with minimal support), serve friends and family, clean utensils after her meal, run and handle laundry for the entire house and run the dishwasher every night. Completely independently.
- In deciding her daily routine and sequence of activities within the set timings of her external instructors. Her time to wake up and sleep is decided by her every day, she wakes up on her own and goes about her morning routine completely independently. This includes taking her medicines too. In her home-schooling environment, she fixes up independently with her teachers her course content, timing of the delivery of that content and the pace of teaching. She will approach us for help and give us feedback to resolve issues that she is unable to. But by and large, she manages these issues totally independently over telecommunication networks of phone calls, whatsapp messaging or emails.
- In choosing her fun activities - On most days, her 2 hours of free time every afternoon, are spent on watching videos on YouTube. While most parents would find this unreasonable, we realised very early on, that this gave her a sense of freedom and a fulfilment of desire to explore. From having a parental guide on her desktop during the early years, we are now at the stage where she watches fun stuff which has helped her in her understanding of English and Hindi languages with a colloquial and accented speech too. This has helped enormously in our international travels because she never fails to understand both the British and the American accents effortlessly.
The area we are working on actively these days and creating opportunities to ensure success is on the front of socialisation. Being home-schooled for the last four years and being an introverted person, she still needs to become totally independent here. But knowing her, we are hundred percent sure, she will emerge successful here too!
Is she happy to make decisions for herself or would rather you made them all for her?
This is a rather difficult one to answer! Gayatri is ONLY happy when she is making decisions for herself. Unhappiness is writ large on her face when she is forced to follow instructions. I will though stress here, that she is very clear on the spheres where she cannot take decisions herself and has to follow us.
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?
Gayatri showed signs of a high cognitive level as a child. So as parents, we focused our energies on her cognitive development totally and completely. That intensive effort has held her in good stead even in her teen years. Her aptitude towards acquiring computer skills, becoming a certified programmer with website development mastered at this young age, is a direct output of that effort.
But this focussed effort did not mean that inputs on her behavioural development were given less importance. Gayatri is appropriate in her behaviour and conducts herself as well as any teenager. She is a shy person and hesitates in making friends very easily. But once the ice is broken, we see her interacting with people on a very ‘equal’ footing.
Can you share how you prepared your daughter to be an independent woman who can make decisions for herself?
As Gayatri was growing up, we realised that even though a quiet child, she had a strong mind of her own. She knew what worked for her and what did not. For example, once she understood the direct connection between her food and her body pains, no one could give her any food that would harm her. We did not need to supervise her eating habits at school. She just would not touch any thing in her banned list! So we understood that if we set boundaries for her and ensure that she understands the rationale, she will comply. She had learnt to trust us hugely and still checks with us whenever she is in doubt.
From early teen years, she gradually started exploring and discovering things for herself within the boundaries that had been set up along with her. Whether it was going out for adventure camps with her typically growing peer in school, or using her phone while out, talking to strangers and sharing her personal information on social media, Gayatri has displayed immense responsibility and caution.
This did not come all at once. We worked on this in steps. We allowed her to use the lift independently and take small messages to our friends on various floors of the building we lived in. Over time, she could go for her dance classes in the common-hall and for her regular gym activities, all by herself. We also left her alone at home for brief periods of time extending from minutes to gradually hours. But we were able to do these only after finding a home in a gated community where she was largely safe.
It is not to say that she did not make mistakes. She overextended her boundaries more than once. I recall how she had been waiting for me to return from a meeting and then to drive her for her art class. At the appropriate time, knowing that I would not be late, she packed her art bag, took her water bottle and stepped out of our home without informing any of the adults there. She came and waited patiently for me in the correct basement car parking slot, but since the mobile connectivity was weak there, my mother panicked finding Gayatri missing from our home. Her many minutes of agony ended only when I called her up to thank her for sending Gayatri down and saving time!! A gentle talking to her at night while tucking her in, made her realise her folly. But that day Gayatri understood the importance of informing adults around her when shifting around in her physical space.
But more than these measures, we have always helped Gayatri trust her instinct. We realise that she has a sixth sense for her self- preservation, far stronger than we are. We tried to build on that instinct and have always listened to her carefully when she expressed her fears or doubts. We have taught her how to prioritise her actions to achieve what she wants to. She now does it with much ease.
Another important piece in this effort was our desire to leave her to handle her mistakes herself. From small things like dropping food on the table while serving to getting late for a class even after repeated reminders, we have let her figure out how to overcome the issues. From applying a stain remover on the table cover and being rewarded by a stain free cloth after the laundry, to getting ticked off by the teacher for being late, Gayatri has had to face the consequences of her actions. Never with anxiety surrounding her mistakes. But always with the knowledge that there will a positive feedback to be received as soon as she rectifies her error. As a result, Gayatri is now a problem solver and an equal participant in family issues. If she runs short of toilet paper one morning, she will not only ensure that it is on our shopping list that day, but she will also be seen rummaging around other toilets to ‘steal’ another roll or we will later find the box of face tissues lying in her toilet!!
We also saw that she thrives on a routine. So instead of forcing her to accept one made for her, we have trained her to make her own weekly and daily schedules on white boards and later on her favourite diaries. This habit has made her an excellent time manager who does not have problems transitioning between activities any more.
5. What is your advice to other parents of children with Down Syndrome?
While I do not have all the answers, I can certainly tell younger parents what I have practised and learnt from raising my beautiful daughter Gayatri. She has been my teacher in more ways than one. This is what I have learnt from her –
- Be a firm parent. A parent can be a friend also, but no one else can be a parent to your child. Never shy away from being strict for their own good. Set the boundaries for them in consultation with them. But adhering to those boundaries should be your responsibility. Give them enough leeway within those boundaries to develop into thinking, independent adults.
- Help your children learn the art of decision making slowly and sensitively. Take small, safe steps in helping them grow independent. Holding them responsible for their own tasks, leaving them alone at home, giving them their private space in your homes helps.
- Always keep communication channels open between you and your child. Build their trust in you to be fair always. This will hold you in good stead always. Always encourage them to think clearly around every situation, (artificially create small ones), talk to them prior to them confronting new situations, brainstorm consequences of their actions to prepare them fully.
- Ask for their opinions in home issues like choosing menu, doing household chores (pre-select the appropriate activities so they can perform them easily and without much support).
- Let them handle their problems themselves. Do not jump in with solutions. This gives them immense sense of achievement and a fearless attitude towards failure.
- Use technology to help train your children in time and money management skills. Many apps exist today to facilitate acquisition of these skills. A constant effort to raise their skill levels and acquire new skills gives them a major sense of achievement and independence.
- But the single most important thing that my children have taught me is that we do not have to struggle to teach them anything. All we need to do is be role models. Our children learn perfectly by imitation. They will follow and pick up all the behaviour patterns and attitudes that we display. So close your eyes, visualise what you want our youngsters to be and just start role modelling that in your everyday life. You will never be disappointed.
Gayatri's view on : 'What do I decide and what would I like to be able to decide'
I decide everything I like to do, when I want to do it and when I don’t want to do it, with whom I want to do it. Every day I decide to eat my favourite food – rice and dal, at least once, I decide when to wake up and when to have my bath, I decide if I want to go for art class or not.
I wish I could decide when I can travel to Delhi to be with my dadi and when I can travel to US to be with my sister, Advika. I wish I could decide when I can have night stays with my friends.
Image of Gayatri and Shalini credit: PANDARINATH
