Here is yet another success story about autism… about a family which conquered the challenges of autism and transformed themselves in the process. 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 November’s autism journal is none other than Mrs. Kamini Lakhani, the founder of SAI Connections. She has shared events and thoughts which she rarely, if ever, has shared before. Here is Mrs. Lakhani taking over:
I want to share something with you that only a few people know about.
When I was in labour with Mohit, it got extended. The nurses gave me injections to bear the pain, and I kept drifting in and out of sleep. On one such instance, I had a vision – it was more vivid than a dream. Sathya Sai Baba was standing in a lush green lawn in his bright orange robe with a baby nestled in his arms. “You have a beautiful baby”, he said. An hour later, Mohit was born.
When the doctors diagnosed Mohit with autism, the first thing I thought was “How can this be?” I kept going back to that vision. Baba had promised that my baby would be beautiful. It was only after many years that I realized that Baba had indeed spoken the truth. Mohit is the most beautiful and majestic person in my life.
My son, who is a handsome 26-year-old man now, inspires me to be the best person that I can be. He touches every life that he reaches out to, sharing love and hope. He has not only changed me as a person by giving me the strength to stand up for what I believe in, or helping me find a purpose in life, but has transformed our family with his autism. That is what someone with autism is capable of doing.
When Mohit was 5, my brother-in-law would say that he was the busiest 5-year-old he had ever seen. I would work with him in the morning, after which an aide took him to school for a few hours (we lived in Korea then). I would finish work at home and spend time with Tanya. Then, when Mohit returned, all my time went in working with him. I put in at least five hours each day with him, and the days when I didn’t, I felt miserable and guilty… like I was letting my child down. Apart from me, Mohit had a special educator and a speech language pathologist who treated him. Our team (the SLP, special educator and me) kept working to get Mohit ‘out of autism’ as soon as possible. I tried everything – Sensory Integration, Auditory Integration Therapy, Biomedical treatment, Craniosacral therapy and even swimming with dolphins – and made frequent trips to the US with him. Back home, I would make video tapes (there was no YouTube) and courier them to my guides in USA, who would respond with feedback. It was laborious. But Mohit showed improvement, despite aggressive behavior and meltdowns, and that was enough incentive to keep me going. Whatever little time remained was dedicated to Tanya and Anil. There was none for myself.
When we moved to Dubai, I would carry my basket case and meet principals of various schools. I felt that because assessments were inadequate, I would show them what my son knew. Mohit and I would go through the motions, using the tools in the basket with which I trained him at home. One principal was was impressed and admitted Mohit. He also got a wonderful guide in Lata Roddam and amazing teachers. I was in Seventh Heaven.
But Mohit had shut down. He had become more aggressive, and physically stronger. Sometimes, he would wake up in the dead of the night and have a meltdown. These times were especially difficult when Anil would travel. To add to that, Mohit had a seizure when he was 14, and the condition has not been remediated since.
When Mohit turned 17, I came across Relationship Development Intervention (RDI), and with that, I found my son. The program made me slow down, and give Mohit space. My guide, Joyce Albu, helped him develop his sense of self. Mohit was good with motor imitation. Joyce turned this notion on its head when she asked me to conduct an activity in which Mohit would not imitate me. I was curious to see how it worked. I took out a bunch of invitation cards and said to Mohit, “We will draw on the back of these cards. But you cannot imitate me.” To ensure that he didn’t, I put up a barrier between him and me. Little did I know that this tiny fragile barrier would break so many of them between Mohit and me. I am not a good artist, so I would finish off quickly and look over at his work. And what I saw would make me go “Wow! This is amazing!” That is when Mohit the artist was born (you can see his paintings by clicking on the link).
Under the guidance of the Sandeep Paradkar, Mohit started connecting at a deeper level with his art. He became more innovative and playful. He started singing while painting, enjoying the colors and the process. And he evolved as an artist. His paintings were exhibited in a group show in Paris, and it was amazing to hear the Director and curators speak highly of his work. When renowned artist Amit Patel visited SAI Connections and saw Mohit’s paintings, her words moved me to tears. I often sit in the room while Mohit churns out his masterpieces. For him, it’s enjoyment. And for me… it’s meditation.
The program didn’t just help me find my son, it also helped me find myself. It freed me from guilt for the first time in 13 years. I started taking care of myself and doing things that made me feel better. I started reading for pleasure after more than ten years. I was no longer putting in five-hour daily regimes with Mohit, and was okay with it. And he was glad too. Those tedious regime were replaced with hangouts. Instead of working on flash cards, we started watching Mr. Bean. And Mohit’s laughter was always contagious. He would LAUGH! And unable to control myself, I would follow suit. We would laugh together till my sides ached, and then we would laugh some more.
Mohit is a different man now. In my obsession to understand what autism is, I forgot to see the boy behind it. Today, I feel that his aggressive behavior was a sign of revolt. “What are you doing with me?,” he would ask. Unfortunately, I wouldn’t listen. But when I did, he took me under his wings and taught me more about the beauty of life than everyone else put together.
Whether it is painting, listening to music, or just having a meal, Mohit is present in the moment. He is the perfect embodiment of Sthitaprajna – no thought about the past or future influences him in the moment. Regardless of what state he is in physically, he is calm and happy. He still experiences horrible seizures sometimes – each of them takes a lot out of me as well. I worry for my son. But Mohit? He just sleeps it off. And when he wakes, he is back to his charming, tranquil self, like nothing happened.
Compare that to most of us who are blessed with so much in life. The things we take for granted – the ability to communicate, being independent and more – are difficult for these individuals. Yet they spread unconditional love and joy. We really have no reason to complain. Living with someone with autism inspires us to be our best selves, because they show us that it is possible, despite the hardships in life.
I have been through a lot for my son. Looking back, I wonder how I managed – a girl like me who barely spoke in school. Then I realize that I did it because I am a mother. Only a mother can take everything that life throws at her child and still keep battling. Because she just cannot, and will not, give up on her child. I cannot emphasize enough on the significance of the mother in the training program. If you are a parent, I know that you will not let go either. Mohit today is self-assured, understanding and loving. He is aware of his environment and people around him. He has built a stronger bond with us, and we with him. This has led to us enjoying a complete family experience. You can achieve this too. Let me help you in it.
I want to come out in the open and state that I am an RDI advocate, not because I am a supervisor for the program, but because hundreds of parents like me have seen its effect. I have met despondent, battered mothers… mothers who had given up all hope, who signed up for the program just because they had nothing else to lose. Within months, the pride in their eyes and joy on their faces have been visible to everyone.
Parents often tell me that it’s too late for them to get onto the family consultation program because their child is 8-10 years old. And I tell them that I got onto it when Mohit was 17. I found Mohit and more importantly, he found himself, at that age. Imagine what parents can experience if they get onto this program earlier.
This is not about scientifically proven versus non-scientifically proven methods. And it certainly is not about trying to go one-up on any other therapy or program. This is about children on the spectrum, and their families. It is about siblings of those children who deserve happiness too, and not feel robbed of their parents’ love in their childhood. It is about people who are looking for hope, for a sign that their child is as capable as they dream he is. This is about making this world a better place for these gifted individuals – to let them live with respect and dignity. This is about exploring the beauty of autism, and with it, the beauty of life.
We still have miles to go, but I can assure you that the journey will be amazing and enriching. Join me on it.