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Vasant Kunj, Delhi, India
The month of April is dedicated to autism awareness with an aim to educate and to foster acceptance and support.
Moving in this direction, we have Vandana Gutpa, a mother to a 28-year-old son Rahul with autism. She is not a trained professional, with any formal degree in handling autism, but her years of experience has taught her a lot. She is here to share her insights and experiences that can go a long way in helping parents in their struggles with children with special needs.
1. Please tell us something about yourself and your family.
We are a family of five – my husband and I, my son Rahul who is autistic and my daughters Sapna and Divya. Sapna is an architect and Divya works on DIY craft projects.
2. How did you come to know that Rahul was an autistic child?
When Rahul was around two and half years old, my friends would often tell me that he looks a little different in behaviour and mannerisms. But I would not pay much heed as my near and dear ones would say that every child is different and so is the time taken by them to achieve the milestones.
I got married at a very young age and had absolutely no idea about autism, so the thoughts about it never really crossed my mind.
By the time Rahul turned three, I had started noticing his behaviour as warning signs. He was not able to speak or respond to our voices, he did not show any action in picking up objects or toys. Very soon he was diagnosed with autism.
3. What was your reaction then?
It took a lot of time to come to terms with the fact that Rahul was autistic. People generally get into that vicious circle of questioning and self-pity – Why me? Why did this happen to me?
The sooner you come out of this circle, the better it is. Because the key to training your child to be self-reliant lies in starting as early as possible. The more you delay, the more difficult it becomes, both for you and the child.
And here I had already lost three and a half years or so.
But after accepting the reality, I was determined to start working on my child. I had to because I wanted to make him independent.
That’s how the journey began – a long one!
4. How do you think is it different to be a parent and to be a parent of a child with special needs?
Life changes the very instance one becomes a parent. It starts revolving around the child, caring, nurturing and enjoying the milestones. But when the child is with special needs, the physical and mental pressure becomes a constant, especially in the initial years when things seem uncertain despite all the efforts.
The key lies in dedicating more time and efforts in the initial years and I emphasise this again and again because starting early has several advantages and fair chances that the child can lead a near normal life.
Believe me, your efforts in the beginning will pay you returns at the later stages.
5. Please tell us a little about Rahul’s schooling and his present life?
I had first got Rahul admitted in a normal school but he was not able to cope up there. So, we resorted to home training in every possible way. When he turned 10, we admitted him in Tamanna School, New Delhi meant for children with special needs. The school is very well equipped to provide training, learning and therapies to autistic children.
Rahul was here for 10 years and then we moved him to Autism Ashram, Telangana which is specially dedicated to offer a conducive residential environment to children and adults with autism.
Today, Rahul is living a heathy and a happy life. He has learned to handle all his tasks by himself and is not depended on any one. He no longer needs a caretaker and is in the L1 level which means he is capable to live independently and works in the ashram, contributing in different ways. He is happy child now and that is what make me happier.
6. What are the early signs of autism to watch out for?
Children usually start showing signs of autism in the first two years itself. But these signs vary from child to child. Some common early signs could be as follows:
- If the child does not respond to their name
- If the child does not make eye contacts
- If the child does not show interest or point out at objects/toys
- If the child depicts repetitive behaviours/movements
7. What role does diet play in children with autism?
Diet and nutrition have the same advantages on autistic children as on others. Maintaining a healthy diet keeps the weight in check. Some of these children do have food allergies and intolerance. Plan a diet accordingly, one that is balanced in terms of minerals and nutrition.
Try and avoid food with preservatives. A no-preservative diet works better.
Here, I would also like to add that when I put Rahul on a sattvic diet (a diet without onion and garlic), I could notice certain positive changes in his behaviour.
However, this is my personal experience and I don’t know if there’s any proven research.
8. What are the kinds of therapies?
Speech therapy is the most important one as per my experience. Music therapy, exercises specially swimming, are also great for channelising their energy.
9. How to train or discipline a child with autism?
What I would say from my experience is that routine is crucial for autistic children. There should be a well-chalked out list of things to do and the respective timings for every day. Nap time, exercise time, play time, meal time, activity time, sleep time – everything should be followed on time as strictly as possible. This keeps them calm and comforted. They feel more secure and happy.
Secondly, exercising has immense benefits on their health and skills. It not just improves their physical fitness and helps in weight control but also improves communication and learning skills. Exercise makes way to channelize their energy.
Toilet training is yet another essential. This becomes easier if you break the process into small steps and instructions are clear and concise. Practice is the key here. Rewarding, appreciating verbally or with signs like thumbs up or any action that shows a sign of achievement, also work on this front.
The process may be slow but eventually with regular efforts, there’s nothing that you cannot streamline.
Having said that, I must say that this journey has not been easy at all. Every day has been a new challenge. There have been several moments of despair, reluctance, low esteem, lack of support and so on.
But when giving up is not an option, there’s something within that pushes you to get up and keep going.
Speaking about the challenges further, there have been phases when Rahul has physically hurt either me or others from the family. Because there are meltdowns when autistic children get agitated and out of control.
I have personally tried to calm Rahul by giving him a shower to cool down or have resorted to massaging to comfort him.
10. What is the outlook of the society?
The society conveniently ignores you. Your friends suddenly stop inviting you for social events, they stop coming to your homes, children in the park run away. These may be small things but
they impact us psychologically.
The society needs to change its mindset. There needs to be more awareness about inclusion.
One welcoming change I recently witnessed while travelling was that the airport authorities and the crew on the flight extended their support in every way.
These things somewhere signal that change is taking place and, in the years, to come, there will probably be more awareness and acceptance.
11. Who has been your biggest support in this journey?
My husband has been a rock-solid support. Without him, I wouldn’t have been able to handle so much. At every stage, I needed psychological, emotional and financial support and he was there for me for every need.
12. What is your advice for parents who are in similar journey?
Never lose hope, not even in the most difficult times. Eventually with patience and efforts, things start falling into place.
When giving up is not an option, it becomes imperative to draw strength from within. This may be difficult but as Vandana said that the moment you accept the fact that your child is autistic, you have taken the first step to move ahead.
One big change that we need is that the society becomes more sensitive and supportive for children with special needs and their families. This will certainly make the journey a little easy.
