Nikhil

In His Own Words

A year ago, I wrote a blog called “The Conversationalist” in which I chronicled our son Nikhil’s journey with his iPad. Nikhil is a special needs child and is non-verbal and the iPad serves as his communication device. When I wrote that blog, little did we realize that Nikhil would spend much of the year at home due to the pandemic. However, it did give us an opportunity to see how Nikhil uses his iPad in a quasi-school setting. I plan to write a separate blog in the future about the online school experience. This blog is a compilation of some of Nikhil’s conversations or choice of phrases that stand out in our memory.

For the first couple of months of the pandemic induced stay-at-home situation, Nikhil was like a lost and forlorn puppy. He loves his school, his teachers and his classmates, not to mention the ride to the school in the school van and he could not understand why he was not able to attend school. Each night, at dinner, he would use his iPad to ask us hopefully “school tomorrow?” We would reply “No, Nikhil”. He would ask us the same question the following night and receive the same answer. After three weeks, Nikhil decided he needed to take a more proactive approach. “I go to school today,” he said using his iPad. When we said “no”, he optimistically declared: “I go to school tomorrow!” Nikhil has now resigned to his fate and even though he asks that question occasionally, it is not as frequent as it was before.

Besides his school, Nikhil loves going out in the van especially to the Mall as well as to Costco. However, due to the pandemic, we have not taken him to these places. We do take him out for long drives in the van each evening. Nikhil looks forward to this and uses his iPad to start saying “Van” the first thing in the morning. One day, after clicking “Van” a dozen times and eliciting no response from us, he typed “I need the van, anybody?” and he looked expectantly at all of us. Good try, Nikhil, but you still have to wait till the evening!

It has been interesting to see how Nikhil makes connections. For the most part, the communication app is organized into a grid with icons. Each icon, represents a picture and when clicked, it either verbalizes the word or opens up another screen. Nikhil was having his online PT session and his therapist asked him if he wanted to do a Yoga pose or to “march”, as in march in place. Since the words that represent these actions were not available on his iPad, his therapist told him that he could point to the pictures of the poses and select one by pointing to the screen. Nikhil instead used his iPad and after navigating through a couple of screens clicked an icon that verbalized the word “march”. His therapist and my wife were surprised. When my wife looked at the icon he had selected, it was for the month of “March”! I can’t speak for others, but I would not have thought of that. In my mind, “march” in that context referred to the verb and not the name of a month.

We were similarly surprised in his Speech Therapy class. One of the exercises in his speech therapy class involves Nikhil’s speech therapist telling him stories and asking questions which Nikhil then answers using his iPad. One day, she told him the story that involved a unicorn. She then asked him a question that involved two choices and the correct answer was “unicorn”. His therapist remembered that the word “unicorn” was not available on his iPad and after giving him the choices, she asked him to either select by pointing to the choices that were on the screen or to press “1” or “2” on his iPad. Nikhil navigated on his iPad to verbalize the word “corn”. He had used the picture of the vegetable “corn” to verbalize what came closest to “unicorn”. Not bad at all, he got his point across.

Sometimes, Nikhil uses a contextually correct word or phrase that we have never heard him use before. One example is the word “frustrated” that I have written about before. We had a similar experience a couple of weeks ago. Nikhil was ready for his breakfast and was seated at the kitchen counter. My wife was slightly busy, putting away a couple of things. Nikhil gesticulated a couple of times and he then brought up his iPad to say “Act now, immediately”. My wife and I were stunned and we burst out laughing. We also scratched our heads since we have never used those words in front of Nikhil. Neither has my wife heard any of his teachers or therapists use those words in the last ten months of online classes. If I were to hazard a guess, he must have heard it on his favorite TV program. Nikhil watches just one show “House Hunters” on the HGTV channel. He does not have the patience to watch it on TV with ads, so we play an episode or two for him on YouTube. I suspect he has heard realtors on the show push a sale stating that the buyers have to “Act now” or put an offer “immediately” to purchase a house. I may be completely wrong and Nikhil might have randomly selected those words, but that seems unlikely to me.

Some of the icons verbalize a complete sentence. During one of the sessions, Nikhil’s classmate had not yet joined the Zoom call, so the aide asked Nikhil if he had anything to say. “I’m good, thanks!” said Nikhil using his iPad and declined to speak further. When the classmate joined, the aide welcomed the classmate and asked Nikhil if he was ready. “It’s time to rock and roll!” replied Nikhil.

Then there is that odd icon which when clicked gives the ominous message: “Then I will climb up on the roof and come down the chimney to get you!” That icon is used only when Nikhil’s older sister is indulging in some good-natured teasing. He clicks that icon and looks at her with twinkling eyes and a half-smile. It never fails to freak her out! Nikhil has no malice though, he is just getting back at her.

We take a lot of things for granted. The concept of time is an example. I can’t remember a point in time in my life when I did not know the meaning of the word “yesterday”, “today” or “tomorrow”. Nikhil’s teacher has been trying to teach him the concept of time as in the days of the week, the months of the year as well as the different phases in a day. Poor Nikhil, just as he learns the name of the current month, the month ends and a new month starts. It must seem arbitrary to him, “December” was the right answer till it suddenly became “January”. Same with the days of the week. To reinforce these concepts, we have designated Saturday as “Trash Day”, an activity that Nikhil enjoys since we go to our town’s transfer station to recycle and throw trash and we try to associate other activities with days of the week or the time of day.

I was having lunch one afternoon when I heard my wife going over the concept of time with Nikhil.

“When do you have your breakfast, Nikhil?”.
“Morning”.

“When do you sleep?”
“Night”

“When do you go out in the van?”
“Evening”

“When do you have your lunch?”
“Afternoon”

Nikhil has the swagger and confidence of a veteran Jeopardy contestant, as he navigates his iPad with panache to rattle out the answers. Just a little while later, Nikhil is in his online class and his teacher is asking him questions while my wife sits alongside Nikhil

“When do you have your breakfast, Nikhil?”
“Evening”.

“Try again, When do you have your breakfast?”
“Night”

“Try again, Nikhil, when do you eat breakfast?”
“Afternoon”.

“That is not correct, Nikhil. Try again, when do you have your breakfast?”
“Whenever! Whatever!”

Those words are on two separate screens, but Nikhil is quick as he constructs his response. There is no accounting why Nikhil chose not to answer correctly. He is fourteen now and perhaps it is that insouciant teenage attitude that rears its head now and then!

The iPad and the LAMP app continue to be a boon for us. For Nikhil, it is a way to communicate with the world around him. For us, it is a glimpse into his thoughts and we are grateful for that. We are sure he will continue to surprise us with his observations and his wry sense of humor. We look forward to the day when he can return to school and use his iPad to tell us all about his day. I’m sure there will be days when he will be loquacious and there will be days when he will just shrug and say “Whatever!”.

3 thoughts on “In His Own Words

  1. I can just imagine what you and Aparna are thinking now that you realize that Nikhil is capable of communication through his IPad system. I wonder about the depths of his frustration that you just didn’t understand what he was trying all these years to convey to you.
    He is very lucky to have you as his parents because many other parents may have given up before this point leaving their children locked in their thoughts without any keys to communicate with the outside world.
    Another very enjoyable, interesting and well-written post. Looking forward to more about Nikhil’s progress.

    1. Dan:
      Thank you for your kind words. It really comes down to Nikhil’s persistence and patience, not to mention those of his teachers and therapists. Aparna has been working with him all these years and she deserves a lot of the credit. The iPad helps to a fair bit, but I’m sure there are a lot more things that Nikhil would like to tell us but is unable to do so. But he is cheerful and dogged and we think that will stand him in good stead.

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