Indulge me for a couple of minutes and picture yourself waking up each day, understanding what everyone around you is saying and conversing with them, only for them to not understand a word you say. You are not inebriated and you are not in a strange land, you are in fact at home and you are conversing with your family and friends. It’s not that you have had a stroke or lost your ability to speak recently. As far as you can remember, it’s always been this way. Sometimes you are fortunate and you get through, but sadly, more often than not, your family and friends do not understand you and they try to distract you or do something contrary to what you are asking them to do. You are patient of course and you go with the flow, hoping you will have better luck next time.
I would be incredibly frustrated if I were in that situation and angry too. I am frustrated and angered by much lesser trivial things. This, unfortunately, was the situation that our son found himself for much of the early period of his life and still does to a large extent today. As a special needs child, our initial focus was on his gross motor skills. We hoped that he would be able to walk and move around. We hoped he would be able to pick up objects with a pincer grip instead of a raking motion. We hoped his cognitive skills would improve and we hoped he would be able to talk.
He made very gradual progress, learning to walk at the age of five and learning to stand up and sit down on the floor unassisted by the time he was seven. He did not talk though and we worried if we would ever be able to understand him. His speech therapists worked hard with him. They tried teaching him sign language. He picked up a couple of signs so he was able to ask us for help or tell us that he was done with an activity. At school, the therapists worked with him to teach him how to identify objects. At the age of five, he was working with small objects and as he grew older, with photographs and then with pictures. The idea was that once he knew what an apple was, to have him relate a photograph of the apple to the apple and once he learned that, to work with a sketch of the apple. The hope was that if he understood enough symbols and icons then he could use a communication board to communicate with us.
Rewinding back a bit, one afternoon, when our daughter was six months old, my wife decided to teach her how to wave goodbye. She got it after a few tries and when I returned home from work that day, my wife said “wave goodbye” and she waved “bye” to me. With Nikhil, we started teaching him how to wave goodbye when he was six months old. At the age of eleven, he finally started raising his hand and pointing his index finger. That is his version of waving goodbye. Development for kids like him progresses at a different pace, almost glacial in some respects. We were surprised though to find that at the age of eight or nine he figured out how to handle the iPad to a certain extent on his own. He loved watching videos of nursery rhymes and after observing us click the home button, swipe to get to the next screen and touch the video icon to display a list of videos, he did the same.
My daughter was skeptical. Nikhil has good spatial memory. He remembers the layouts of houses he visits and can figure out when we are nearing home even when we are a mile or so away. She figured that he was relying on the location of the icon on the screen and so she moved it and gave the iPad to Nikhil. He swiped to the next screen, paused, looked around, found the icon and launched the app. She then moved it to another screen. He swiped, paused, looked around, swiped again and found the icon. After she moved it to the fourth screen (yes, we had a lot of apps), he gave up figuring she was playing the fool with him.
His speech therapist assured us that his receptive communication skills were better than his expressive communication skills. He understood more than he could express. This was borne out one day when I happened to say “can” and he pointed to a can. I said “window” and he pointed to the window! I said “fireplace” and he casually pointed to the fireplace. I noticed that he could identify about 40 things in the house. He probably could for some time but I’m not sure what prompted him to start pointing out that specific day. Perhaps it was a culmination of all the effort put in by his therapists and staff at school and my wife at home.
We were cautiously optimistic when his speech therapist at school told us that they were going to use an iPad as a communication device for him. The school district approved the iPad but it took a while for it to come through and Nikhil started working on it in earnest from September 2016. The therapist used the “LAMP Words for Life” iOS app. The app is comprised of a grid containing icons (or symbols) which either represent words or categories. The categories when clicked lead to subsequent screens that have words related to that category. A speech therapist reading this would probably grimace at my choice of words but I guess I’m trying to explain the app as a layman. Each symbol is also associated with text and the app also converts text to speech. In order to construct a sentence, one has to click a combination of symbols, some of which might be buried a couple of screens below the main screen
As time passed by, we started getting feedback from his school saying that he was making steady progress with the iPad. When we would try to get him to use it at home, he would click randomly on the screen or he would repeatedly click on the “bathroom” symbol and laugh. As with all young boys of his age, he was not averse to potty humor. Nikhil has always been like that; he seems to be more functional in school than at home and his teacher and therapists assure us that other kids are like that too. Months passed and we figured that the iPad would probably be used primarily in school, until one February evening in 2017. It had snowed and I was cleaning the driveway. My wife sat with Nikhil in our foyer watching me when Nikhil took his iPad and clicked a combination of symbols that the app voiced “Dad outside snow”. My wife was elated! She called me excitedly and when I came in she asked Nikhil to use his iPad again. “Hungry Chicken” he said. He was obviously hungry and a man of few words but he got his message across! I think we danced a small jig that night.
After that, Nikhil figured that he could finally get through to the numbskulls at home who had been unable to understand him for so long. He started using his iPad more and more. As proud parents we had him demonstrate his skills to friends who visited us home. We have a picture of Nikhil, seated at the kitchen counter with three families crowding around him, cheering him as he constructs short sentences with panache on his iPad.
It’s been a little over three years now since Nikhil started using his iPad and it has become an integral part of his life. He uses it all the time in school and to a fair extent at home. He has started constructing small sentences and can carry brief conversations. My wife and daughter are currently visiting India and I took time off from work to spend time with Nikhil at home during his Christmas holidays. It has been an educational experience for me, teaching me as much about my communication skills as his. While I have taken care of Nikhil in the past when my wife has visited India, I was a bit wary this time. Nikhil is like a lamb with my wife but with me, he is like a man-eater that smells fear as he stalks his prey. Okay, I am exaggerating, he is more like a rambunctious puppy when I change his diapers. It’s a game for him and he squirms around laughing and locking his legs at his knees and deriving great pleasure as I struggle to get the job done. Sometimes he kicks out. If I’m lucky he gets my glasses. If not, he gets my nether regions and I howl in frustration and pain. If my wife is at home she comes over and asks me to step aside and she gets the job done with a minimum of effort. “You need to talk to him,” she tells me. “I do,” I reply crossly. “He just does not listen.”
Actually, I’m the one not listening. The last couple of weeks have given me the luxury of time (and without the backup of my wife), I’ve been able to observe him and engage him as I feed him and change his diapers. I’ve realized that usually, I’m preoccupied and am carrying on a conversation that is totally irrelevant to what he is trying to tell me. I am so used to communicating with other people with words that I do the same unconsciously with Nikhil. So now, I pick up on cues and use context to figure out what he is interested in and things have been smoother. It is all about mindfulness!
Nikhil continues to surprise and impress us. My friend came over for dinner last week and he said: “Hi Nikhil.” Nikhil used his iPad to say “Hi.” My friend reflexively asked him, “How are you?” “Fine, thank you!” replied Nikhil. My friend was suitably impressed. As I thought over it later, I figured that it was something that he had been taught at school. But then I realized that he was capable of expressing his emotions appropriately and it was not a knee jerk reaction learned by rote.
A few instances stand out. We were at his orthotist’s office. He was trying to get a cast of Nikhil’s foot for his SMO (Supramalleolar Orthosis to support his feet). Nikhil did not take kindly to this and was flailing around so my wife and I were holding onto him for dear life. When we paused to catch our breath, he used his iPad to tell us “I am sad!”
While visiting his neurologist, we showed off Nikhil’s prowess on his iPad. “Can he spell his name though?” asked the neurologist. “That would be useful if he were with strangers.” We had to admit that he could not. “This app deals with symbols, it’s not like a keyboard,” I started off and stopped as Nikhil brought up a hitherto unknown screen and started spelling his name “N I K H J L.” Close! We were stunned! It was also impressive that Nikhil was listening to our conversation and understood what the neurologist was asking us. The next day his teacher sent a note home saying that she had been working with Nikhil for a while to get him to spell his name and that day, he had walked up to her excitedly and showed her his iPad when he had spelled it correctly. She was incredibly proud of his achievement and rightly so. It’s not that he has learned the alphabets; it is pattern recognition but we will take it.
Nowadays, his conversations mainly revolve about going to the mall, Costco, grocery store or library in that order of preference. It’s not that he is an avid shopper, he just loves to wash his hands at the sink in the restrooms. He also tells me that he misses his mother and sister. He also talks of his classmates and school staff. “Max home” he told me on Friday. I would have normally brushed it off, but his van driver had told me earlier that day that his buddy Max had not come to school, so Nikhil was telling me that Max had stayed at home. Without context, I would have missed that. While the iPad helps, Nikhil is also limited by the number of symbols on the app. If there is a word that he needs to use but it is not in the app, he is out of luck. However, the iPad has helped reduce his (and our) frustration.
While the iPad has helped Nikhil express himself, he continues to use a combination of signs and actions to communicate. Some of these may appear quixotic to others but make sense to us. He has this sequence of actions that involve touching his shoulder, his mouth, his elbow and his crotch. If you don’t understand this or respond, he will get frantic and keep repeating it with urgency. If you make an educated guess that he is saying “I want to go to the mall, eat at the food court and wash my hands, so start getting me dressed by changing my diaper,” you would have guessed right! But there are some things about him that have never changed. Every once in awhile, he gets this slightly dreamy look in his eyes, a beatific smile plays on his lips and he will make sounds like a contented puppy. He will then reach out to his mother no matter where we are and kiss her. It could be at his Miracle League baseball game, on a park bench or on our way out from Costco. Some actions just speak louder than words!
Even though Nikhil is still non-verbal, he has come a long way. If somebody had told me five years ago that Nikhil would have a conversation with me, I would not have believed that person. I chuckle when my wife corrects his grammar. I’m just plain happy that he is able to communicate his thoughts, whereas she wants him to do it in the Queen’s English! Interestingly enough, Nikhil is bilingual, he understands English and our native tongue equally well.
I understand that Nikhil is fortunate to benefit from a confluence of technology and the experience of dedicated individuals who make this possible. Hardware has been getting cheaper and the developers of the LAMP app claim to harness 50 years of experience in the Language Acquisition through Motor Planning approach. To me, however, the heroes are the therapists and the school staff who work with children like him. That’s where the rubber meets the road. They have to approach their job with patience and dedication. There is no instant gratification. The results are not always visible and they build upon work put in by previous therapists and staff members. The ability for Nikhil to identify symbols and relate them to real-life objects and emotions comes from efforts that have been going on for the past eight years. However, deep down, the satisfaction must be immense, for when they succeed, they succeed in giving voice to a child who can tell his parents that he misses his sister and loves her when she is away at University or that he is hungry and wants to eat or that he wants to go out in the van. Small things that most of us take for granted but the world of difference for a child who was a prisoner of his thoughts.
Technology in general and phones and tablets, in particular, get a lot of flak for being a source of distraction and a conversation killer. For kids like Nikhil though, they have had a positive impact. Can chips be implanted which will convert signals within their brains to speech? This assumes that the brain is functioning normally. Perhaps, stem cells may hold the solution. For reasons unknown to the various doctors who have treated him, Nikhil has cerebral atrophy. Stem cells injected early enough might perhaps help regenerate the cells in the brain? I have no idea but I’m hopeful that science and technology will find a solution.
The naysayers talk of how mankind has lost its way and how we live in evil times. They yearn for the good old days of yore when righteousness ruled. If Nikhil had been born in Sparta, as a developmentally delayed child, the law of the land would have decried that he be abandoned. In Rome, he might have been cast into the Tiber river. The proponents of eugenics in the 1930s would have had him institutionalized or worse yet, euthanized. Institutionalization was the norm for much of the 20th century. Fortunately for us and Nikhil, times have changed. I’m not sure what the future holds for Nikhil and us, but for now, I’m just grateful that Nikhil can voice his thoughts. And I must admit, he is quite the conversationalist!