Family & Friends, Nikhil

Back to School Again

As a young boy in elementary school, the end of the summer holidays heralded a familiar knot in my stomach.  The anticipation of meeting my classmates after a long break was tempered by the twin nemeses of every schoolboy – homework, and exams.  Fortunately, our son Nikhil does not seem to suffer from the same malady as me. It was his first day of school today after the summer break and he was happy as a clam to return to school.

When the pandemic struck last year, Nikhil’s school was initially closed for a couple of weeks.  Our daughter had also returned from College and Nikhil probably thought it was vacation time.  However, as the days passed, he started wondering why he wasn’t being sent to school.  Each night, during dinner, he would use his iPad to ask  “School tomorrow?”.  When we would reply “No school, Nikhil”, he would take it in his stride.

However, he must have been even more perplexed when he would have to stay in the van with my wife, while I went into Costco.  Apart from school, Nikhil loves visiting Costco and the Food Court at any Mall.  He would get all excited as we pulled into Costco and then watch with bewilderment as only I would alight from the van and go into the store.

The initial two weeks got extended for another couple of weeks.  Nikhil had been asking hopefully each night “School tomorrow?”.  He finally decided to take a more proactive approach and one morning he declared “I go to school today”.  Poor Nikhil, that did not work either.

As the scope of the closures became apparent, Nikhil’s school decided to switch to a remote program.  His teachers came up with a routine and compiled materials that they shared with us.  And so, one morning, Nikhil found himself in the sunroom with his communication device and attending a Zoom call with my wife sitting next to him. It was our foray into the world of remote learning.

Nikhil was excited to see his teachers, therapists, and aides but he was not too happy to do his schoolwork.  This was a new experience for us but I’m sure it was the same for the teachers too.  In Nikhil’s mind, school is school and home is home and never the twain shall meet. Yet, here he was at home, sitting with his mother and being expected to do school work. Nikhil also thrives on a routine and it took him some time before he slowly settled into the remote learning schedule.

We sat in the sunroom for his lessons and after each class, he would point outside.  We would reassure him that we would take him out in the evening.  His therapist happened to notice this one day and she told us that they would usually take him out for a walk in the school corridor or outside after a class as a treat.  Thus began our “backyard walks” routine that I have chronicled in another blog.

The Physical Therapy classes were amongst the most challenging for us. When Nikhil is disinterested in something, he follows the Gandhian principle of Satyagraha (non-cooperation). He either stiffens up like a board or goes limp like a noodle. Needless to say, neither of these work well while trying to do yoga poses.

I tried to assist in the PT sessions but I soon found that my presence was a hindrance. Nikhil makes strong associations with people. His sister is associated with lullabies on the piano, goofy antics, and interesting videos on the phone. His mother is associated with all the good things that mothers are known for and is to be rewarded with hugs and kisses. Dad is the chauffeur who drives him to the mall or Costco and the somewhat absent-minded storyteller who tells him stories of van trips to the mall and Costco. So if I showed up to help in the PT class, Nikhil would either start signing “van mall” repeatedly on his iPad or keep jabbing at his shoulders indicating that he wanted the mall story. So it fell upon my wife to grapple with him during his PT sessions. At the end of each session, my wife would end up with a strenuous workout while Nikhil was fresh as a daisy!

Remote learning from home

There were other distractions too. While seated in the sunroom, every car and truck that passed by did not escape his scrutiny. He would also get excited if any of his school staff happened to be seated in a location where objects of interest to him were visible. He would keep eyeing the microwave or refrigerator and it was an effort to draw his attention to the task at hand. When winter came around and Nikhil started sitting at the dining table, my daughter and I had to be very careful when we made our way around upstairs. If he heard the sound of our footsteps or the beep of the microwave, his ears would perk up and he would crane his neck to see if he could get a glimpse of us. We learned his schedule and made sure we stayed away during his classes.

Nikhil is adaptable though and soon settled into a routine. The online classes were possible for us since my wife was able to dedicate her time wholeheartedly to Nikhil. It wasn’t just a question of dedicating her time, she is also blessed with an abundance of patience and she worked with Nikhil diligently through his various classes. It gave us a good idea of what happened in Nikhil’s classes and she was able to draw upon some of those learnings in her interactions with Nikhil. When she noticed that Nikhil was paying attention specifically to “Pete the Cat” stories, she ordered a set of books and started reading him stories about Pete the Cat. She worked with him on his writing, mimicking the instructions given by Nikhil’s OT.

The online classes also increased our appreciation for Nikhil’s school staff. A lot of patience and understanding is required while working with special needs children. There is no instant gratification or feedback, it is a slow journey with what appears to be glacial progress on the part of the student. But eventually, over a period of time, the child develops the skill that is being taught. It also takes thinking outside the box to figure out how best to tailor instructions to a child. There is no “one size fits all” formula.

Online learning also takes resources. At one point in time, we would sit with three iPads for Nikhil’s classes. One iPad was Nikhil’s communication device. Another iPad had the app that Nikhil used to trace alphabets. The third iPad was used for the Zoom call. We were fortunate to have a couple of iPads at home that could be used for Nikhil’s classes but I’m sure there are families out there in other parts of the country or the world for whom this is a stretch.

When school reopened in October, we kept Nikhil at home. He was perplexed to see his teachers and classmates in his classroom while he was still in the dining room at home. He looked pleadingly at Mom and asked “School tomorrow?”. No, Nikhil. After asking a few times, he resigned himself to his fate of remote learning from home. Then one day in May, we woke him early and Nikhil went through his usual school routine. When we put on his orthotics and shoes, Nikhil must have guessed he was going to school. His school van was not available so we drove him to school. He sat in his seat with an expectant look on his face as he gazed out at the familiar route to his school. As we pulled up to his school, he had a goofy grin on his face. He clapped as he saw his staff and grinned broadly. Nikhil returned home happy that afternoon, he had started school again! After three weeks, it was summer vacation and then another month of summer school.

The last few days, Nikhil has been asking “Robin, van?” Robin used to drive Nikhil to school. Interestingly, her name is not on his iPad, however, Nikhil has figured that he can navigate to his screen of birds and animals and click on a specific bird and his iPad will sound “Robin”. We were told over the weekend that Robin would not be driving him and he had been assigned a different driver. We. prepared Nikhil over the weekend telling him that Robin would not be driving him to school.

Waiting for the van. – first day of school

When I entered his room at 6:50 am today, I saw him awake and sitting up in his bed! The routine of getting ready for the school must have been comforting to him. We took the customary “first day of school” picture as we waited for the school van. When it pulled up, Nikhil stood tentatively on the step. Robin was not at the wheel, the van looked different! He paused, taking everything in and his eyes lit up when he saw his classmate already seated in the van. After considering all his options, he decided to make his way to his seat and we strapped his harness to the seat belt.

There are some changes this year. It’s a new school, though Nikhil attended it for a month as part of summer school. He has a new teacher but the therapists and aides are the same as last year. The specter of Covid still looms and we are keeping our fingers crossed hoping that the school year will not be affected. There are a million things going on in this world but in Nikhil’s world, there are three things that matter the most to him now. He misses his sister who has gone back to college. He clamors for his trips to Costco and the Mall. And he wants his regular school routine. One out of three is not bad, we are happy to report that he is back in school again!

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