Yes, Autism is Tough. So what!

In keeping with tradition, here is another success story about autism, about how the family decided to conquer the challenges of autism and found the true meaning of life. This series of Autism Success Stories is aimed at celebrating the development and achievements of our young stars and their families. Through these stories, 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 October’s autism journal are the Patels from Pune – Sweta and Gurudas Patel, who are entrepreneurs, and their two children – Aahan and Arav Patel. Aahan is 16 years old and Arav is 12. Here is Sweta who shares her wonderful journey through life with us.

 

“Aahan, science is difficult, na?”, I asked.

 

“Yes, but so what? I will do it”, he responded.

 

This is the biggest lesson that Aahan Patel, my 16-year-old son has taught me: Yes. It is difficult, but so what!

 

From the age of 1 1/2 years, Aahan would not speak, but point at things that he needed. I consulted with a renowned pediatrician here in Pune who shooed me away saying that I was being a hyperactive mother. I kept asking him questions but his responses were the same. When Aahan was 2 1/2, I was referred to a speech therapist who said things which made me go “What is she talking about?” Then, I was referred to a sensory therapist in Mumbai, who was capable of diagnosing autism in Aahan, or least referring me to a developmental pediatrician, but didn’t do so. I didn’t even know what a developmental pediatrician is. And things continued the way they were.

 

So Aahan was diagnosed with autism spectrum at the age of 5 1/2 years. The first thing doctors and professionals told me to do was to simply accept it. That’s how he was and would be, and I should learn to deal with it. Well, that was fine, but for one small problem: No one can decide what my children or I can or cannot do.

 

The more people told me that this is how things would be, the more resolute I became.

 

Aahan initially didn’t make eye contact – let alone a meaningful or non-meaningful gaze. And teachers at school complained that he did not write. Because no one offered hope or support, I had to be innovative. Children on the spectrum have differently wired brains and have to be taught differently. So for the first fifteen letters of English and Hindi, I cut out chart paper blocks, applied gum and stuck sand on them. Aahan would touch those letters and learned to write them, and from there he picked up fast.

 

Even today, Aahan has some difficulties. His language is not as advanced as neuro-typical 16-year-olds, and he doesn’t understand snide jokes, sarcasm or boyfriend-girlfriend talks.

And he knows that he is different. He also knows that because of this, there are times when he is bullied at school. But that doesn’t stop him from being the person that he is. I’ll share an incident with you. It occurred two years ago.

 

One boy particularly was bullying Aahan a lot, but I didn’t intervene because I was letting my son sort things out himself. One day, when I picked Aahan up from school, the bully was still there. He had been left behind by his school bus driver because he was being nasty.

 

Aahan turned to me and said, “Mama, why don’t we leave him home?”

 

“I’m not doing it”, I said as we drove off. “He bullies you and that irritates me.”

 

“But mama, think about his mother. She must be waiting at home for him just like you wait for me.”

 

I had no answer to this, and we turned around to pick him up. By then, the bus driver had returned and picked the boy up. Aahan had gone beyond feeling irritated about the bully and instead thought about his mother. There is an ocean of forgiveness and love in his pure heart.

 

Success stories of people who conquer autism in India and are on the RDI program

5 points to guess who Aahan is

Aahan has also become tremendously aware and responsible. I distinctly remember one incident when he was 6 years old. I would leave him every day to the school bus, which would come below our house at 6:30 each morning. One day, Arav, who was 2 years old at that time, had high fever. So I left Aahan downstairs, told him to get onto the bus, and returned to attend to Arav. At 8:30, I found that Aahan was still downstairs. The bus had not come, and my son had waited for two hours without realizing that something was wrong!

 

Fast forward to now when I am comfortable leaving Aahan alone at home. In fact, I feel relaxed and carefree when Arav is in the care of Aahan and I step out with Gurudas.

 

Here’s another incident: last year, Arav was sick one day and I took him to the doctor. In a hurry, I had forgotten to turn off the gas on which the cooker was mounted. I called Aahan and told him to go upstairs, call the aunty and tell her to turn off the gas (I would not let him touch the gas until then). Instead, he called the aunty from our landline phone and asked her to come down. When I asked him why he did that, he said, “If I had gone up, I would have to leave the house door open. What if someone had come at that time?” My son has come such a long way.

 

Everyone gravitates towards Aahan, not out of sympathy but out of sheer love. Be it our relatives, friends or even his teachers. If his teachers have a free period, they tell Aahan that they have time to teach him something he finds difficult. Everyone knows that what they see is what they get. No malice, no manipulation… just pure unbridled joy and love.

 

When the ex-principal of his school retired this April, students were encouraged to say a few words about him. Aahan took to the stage impromptu, and teachers told me that he moved them to tears. A few months later, the ex-principal told me that she wished that she had recorded Aahan’s speech, because even when she thinks of it she gets goosebumps.

 

In academics, Aahan and I reverse roles as compared to neurotypical children and their parents. Here, Aahan gives me a break when I feel exhausted while teaching him. “Take a 5-minute break and come back to teach me this”, he says. And how do I threaten him when I’m angry? “I’ll take away your school books!” That has the desired effect.

Living with someone with autism is beautiful. An autism success story in India

Keep calm and say “Aahan”

 

One questions keeps most parents of children with autism up at night: After us, what? But I two years ago, I had a conversation with him that put my worries to rest.

 

Aahan said that he wanted to buy a sedan when he grows up. “Papa will sit beside me. You, my wife and 2 kids will sit behind, and we will go for drives.”

 

“Aahan, you will live separately with your family, not with us as you might be working in separate city”, I said.

 

“But mama, by the time I start working, papa will be retired so you can come and stay with me. Who will take care of you and him then? You both must come and stay with me and let me take care of you.”

 

I know my future is secure, thanks to my son.

 

I want to share something with you. You may think I am weird, but I really think you should know this: The first time Aahan lied to me, I was delighted! Well, that spotless soul couldn’t hold it in himself for long and came clean very soon. “I know”, I said. “Let’s try better the next time.”

 

Which mother feels happy when her child lies to her in this day and age? Well, I do, and I’ll tell you why. Aahan is such an angel that my friends call him ‘Guru Aahan’. They take it as a challenge to make him lie, to make him say some slang words… but he just won’t budge!

 

And my son wants to open a four-wheeler-dealer showroom and a jewelry showroom. He will be marvelous with customers, but I worry about him. Because he is so trusting and helpful, partners and employees will fleece him. So now that he lied to me once, he is aware that people can lie too, and will be cautious.

 

Aahan has taught me so much – not to listen to people who believe that something cannot be done, that the world is much better than it seems, that there is still unconditional love being spread out there. And I am one of the fortunate people to get it from my son. I had not struggled in my life before Aahan came into it. The work I did with him, the effort we have put in together, and the results we have witnessed… they’re simply unbelievable! He has brought me closer to my God and myself. He has taught me to be proud of him, and of myself.

 

When Aahan was diagnosed with autism, doctors had told me that he wouldn’t make it past the second standard. Today, Aahan is 16. He’s in the 9th standard, studies well and wants to go abroad to study further.

 

Parents often ask me how I manage it. I say, “It’s tough, but so what? Is your child not worth it?” Yes, we have worked hard… very hard. Living with someone with autism is not a cakewalk. But what is a life without having worked hard? What are parents for? Today, I look at people who have everything they can ever want, and yet feel empty inside. Me, on the other hand – my life is so meaningful, so beautiful. I have love. I get unconditional love and joy which I couldn’t have imagined. I would not trade a single moment of my life. Given another chance, I will want to live this whole life in the exact same way once again.

 

As parents, you must take hope. You must not settle for mediocrity – whether from yourself, your child, or your therapists. It is a marathon, not a sprint. There is no magic pill that will help you and your child conquer autism. Aahan wants me to tell you that everything is possible to achieve. You just have to work hard for it. Yes, autism is difficult. So what?

 

Mrs. Kamini Lakhani’s thoughts

 

Thinking of Aahan automatically brings a smile to my face. His warm, caring nature can brighten anyone’s day!

 

No meeting of ours is complete without him enquiring about Mohit or asking about Angel, my dog. These questions are asked genuinely, and not in a rote manner.

 

Six years ago when I first met Aahan, we could not have free flowing, easy conversations. Our conversations were strained with a lot more effort from my side.

 

Today our conversations are effortless, spanning a variety of subjects. Aahan surprises me with his understanding and his level of awareness. His care and concern comes across clearly.

 

I look forward to all of Aahan’s dreams of studying further and running his own business becoming a reality. I see him enjoying genuine friendships and relationships.

 

The credit of this phenomenal progress goes to Sweta and Guru. Truly, their persistence and hard work has paid off.

Yes, it hasn’t been easy, but it’s definitely worth it.

Never, ever give up!

 

If you are the parent or guardian of someone with autism or a learning disability, your family can achieve these remarkable results too. This parent training program will offer you all the support and guidance that you need for these landmark improvements.

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Kamini Lakhani

Kamini Lakhani is the founder and director of SAI Connections. She has been providing services in the field of autism for more than 25 years and is the authorized director of Professional Training for RDI in India and the Middle East. She is also the mother of a young adult with autism.

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