After a two-month hiatus, we return with another success story about conquering the challenges of autism… about a family whose unflinching dedication has helped a bright young boy truly enjoy his life. These Autism Success Stories celebrate the development and achievements of our young stars and their families. Through these experiences, we want you to know how beautiful living with someone with autism is, and that there is always hope and support for you (as a parent and as a professional).
Featuring in February’s autism journal is Zohra Padamsee, who is part of the family which owns Eagle Home Appliances. She shares how her son, Nafi, helped her evolve as a person, and taught her important lessons in life. She also talks about why her son, who didn’t care about things happening around him, today enjoys life every day. Here is Zohra sharing her thoughts and experiences:
When he was one-and-a-half years old, Nafi joined a playgroup. There I noticed that he was not like other children. His sitting posture, his low attention span… I noticed these because the playgroup demanded that parents be present with their children. While other children sat in their parents’ laps, Nafi stayed away even if I forced him to sit with me. While children paid attention to the teacher, Nafi was aloof. He always found something else to do or play with. After a couple of terms, we approached Dr. Vrajesh Udani and discussed the symptoms and delays with him. At the age of three, Nafi was diagnosed with autism.
Initially, Nafi attended 1-2 hours of occupational therapy each day. When he was six years old, he was admitted at SAI. Nafi was one of the first students at the center.
In between, we took a three-year break from SAI. I wanted to try the Sunrise homeschool program. I visited the UK and got trained on it. We then visited the US where we were trained on an intensive program. After returning to India, I hired and trained 4-5 teachers on the Sunrise program. A room with a mirror was set up and Nafi would be in it from around 10 in the morning to 5 in the evening. Each teacher would conduct sessions with him for two hours. Even lunch was in the room for Nafi. I observed the teachers from a separate room and gave them feedback.
The sessions were useful. Nafi gained a lot in communication and emotion. However, we would get stuck since this was an overseas program and the communication was not enough. I would submit videos, but the phone consultation lasted just forty minutes once every week or fortnight. We kept encountering roadblocks often.
So we went back to the SAI centre. Nafi has been there ever since. We have seen tremendous progress in his awareness. He now knows what is happening around him. He acknowledges the presence of others (something that didn’t exist before). He communicates his feelings and thoughts in various ways (he is non-vocal). He also completes his tasks properly. Earlier, his work was haphazard. But now, he ensures that it is done correctly without prompting.
For instance, yesterday we worked on an activity where we placed envelopes in a stationary box – the plastic one with compartments. Earlier, he would take the envelops from me and put them on the table, or put them in the box but not close the lid. Now Nafi stacks them in specific compartments carefully. If an envelop sticks out of the box, he notices it, opens the compartment, places the envelop properly and closes it. He has become observant and likes perfection. Even when we arrange flowers in a vase, he stays with each flower until it’s perfectly balanced.
Nafi has also become more open to trying activities which he didn’t like before. For instance, he would not enter the kitchen. Maybe the smoke, cluttering noises and the smell of oil made him feel hypersensitive. Now, however, he and I carry out kitchen activities 2-3 times a week. In fact, we have reached the stage where he hands me the ingredients to put in the frying pan, and sometimes mixes them himself. He also adds big potato pieces into the cooking oil by himself. And he is careful. Even if he doesn’t want to work, he stands beside me and observes what I do. This is a huge achievement for us. We also take turns in the kitchen. I put a potato piece, then he puts one. This co-regulation has helped to build a strong back-and-forth communication between him and me.
Sometimes, I don’t pack the vegetable in his tiffin box. I tell him that we will cook it at school, and he becomes happy. The potato vegetable is his favorite. So much that he would earlier start eating it in the kitchen itself. But now, he listens when I tell him that he should eat it with his lunch in his room. He knows that he will get to eat his favorite vegetable, but in a particular way. He carries the cooked food to his room and relishes it.
These changes have mainly occurred in Nafi because he gets time to do what he wants, to respond how he chooses. I have stopped prompting him or leading him by his hand in activities. He has learned everything on his own. Noticing the envelops sticking out and placing them properly, neatly stacking the flowers in the flower vase, cooking with me – I didn’t teach Nafi any of this. He learned these while watching me, by co-regulating with me and by trusting that mamma does what is best for him.
Nafi likes painting. Each of his paintings have a deep meaning. Under the guidance of Sandeep Paradkar at SAI Connections, Nafi enjoyed it even more. He doesn’t use the brush. So Sandeep would apply the color of Nafi’s choice on his hands. Nafi would then rub his palms and apply them on a canvas. The texture, brightness, and other aspects of the colors have a soothing effect on my son. You can see his amazing paintings by clicking here.
Nafi likes physical activities too. He skates, and loves swimming. Each day he spend about 90 minutes in the pool. On some holidays, he is in the pool twice. He is fond of water, and doesn’t lie in it just for the sake of it. He swims, holds his breath, goes underwater, touches the bottom of the 5 1/2 feet deep pool… my son is an amazing swimmer! This love for water has been instrumental in other aspects of his life too.
We go for regular walks. We walk on Carter Road, holding hands. He crosses crowded streets, fully aware of the vehicles around him (more aware than many neurotypical people). We also hang out at the mall every Sunday. We don’t shop because it tires him. But we complete full circles of each level – it takes us about forty five minutes. I don’t have to worry because he is relaxed. He walks comfortably and doesn’t have issues with noise, except in malls where DJs play blaring music.
Nafi is fifteen. Time has flown by. I want him to become independent, to enjoy leisure activities when I am busy. Maybe play board games, where he will love my company and we share emotions. It will be nice if he spends quality time pursuing meaningful leisure activities, and we are on track to achieving that.
I think that most of Nafi’s improvements are a result of changes in me, thanks to RDI. Living with someone with autism changes you. It slows you down. Earlier, I would bombard him with instructions, and even force him to do things. Now I relax. Nafi not only senses it, but also reciprocates. I feel that our child learn more through observation than being led and taught. Our mindsets and moods rub off on them. If we are anxious or impatient, they sense it and respond accordingly. But if we are at ease, making them feel like things are going well and there is no hurry, they respond better.
Neuro-typical children are less hardworking than children with autism. They don’t feel the need to offer a helping hand with anything, because they are surrounded by people to do them – mothers, elders, servants, etc. But our children observe us and connect with us through these activities. It build trust in them, and they don’t need prompting to do it. When Nafi lays the common table at school for lunch, I say, “See Nafi. Your friends are eating because you laid the table nicely.” He understands, and he smiles. I can’t put in words how proud I am of my son.
Mrs. Kamini Lakhani’s thoughts:
Nafi is the first person to greet me, every morning, when I enter the Center. Not a single day goes by where he doesn’t walk into my cabin to check on me! What a far cry from the little boy who seemed oblivious, dysregulated and hyperactive. Today Nafi shows awareness and deeper understanding. This handsome young man can brighten anyone’s day with his naughty smile. He can light up a room with the glint in his eyes.
The credit of this metamorphosis goes to Nafi’s mother, Zohra. It’s hard to come by somebody who is as dedicated, committed and consistent as Zohra is. I feel blessed to be part of this wonderful journey with Nafi and his family.