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Third Year (April 2020-21)

“Little by little, electric current by electric current, the nerves made strategic advances.”

Tears of Amber by Sophia Segovia


 In April, life came to a screeching halt with the onset of the COVID-19 pandemic and the request to shelter in place. Speech therapy appointments and church services were switched to virtual events. Other activities, such as his Brain Training group, dance lessons, and volunteer work, stopped meeting altogether, and with it, Matt's opportunity to converse regularly with people other than his family ended. We did our best to involve Matt in various activities to take up the slack.

 

5/25/20 For the first time, Matt identified that his brain was sharper. Mike and I agreed that he was experiencing a surge in cognitive processing and communication (rating = 3.0). To prove this point, he placed his lunch order at Juicy Burger, speaking clearly and confidently, even with a mask on. We began to look for opportunities for Matt to be exposed to and talk about engineering topics with people in the field. We contacted a previous student at Lafayette College, Phil Bedoukian, who agreed to call Matt every Wednesday night. At the same time, Dave Albonesi, Matt’s advisor and friend from Cornell University, offered to meet virtually on Friday mornings. Bless their hearts! The first Wednesday, Phil and Matt had a 30-minute phone conversation. Matt was excited and animated as they spoke. Phil did most of the talking while Matt appropriately replied with “uh-huh” or “yup” and an occasional comment. It would be four to five weeks before Matt could collect his thoughts and interject them into the conversation with some level of confidence. In the months to come, Matt began to hog the conversation more and more. Poor Phil had to take a backseat and do his best to understand Matt, who still didn’t enunciate well, spoke too quickly, and slurred some words. Fortunately, Phil didn’t seem any worse for the ware.

 

The dynamics of the Zoom meeting with Dave worked better than Phil’s phone calls because of the added visual cues. Phil and Dave were very patient with Matt—he frequently repeated himself within a conversation and from week to week. Most often, he didn’t, and still doesn’t, remember what he has told various people. His exuberance for making beer and wine and the topic of his research proposal were always on the tip of his tongue—but never the daily grind of getting better.

Around the same time (April-May 2020), I assigned Matt the task of creating a two-part mini-lecture series. The topic he chose was Computer Engineering 101. Prepping each lecture required much guidance and help from the Google Search engine and me. It took five weeks to develop the lecture content and PowerPoint presentation, practice Part A, and another three weeks to wrap up Part B. He delivered these 20-minute lectures to a group of family, friends, therapists, and ‘tutors.’ I’m sure it wasn’t straightforward for people to understand him, but to me, it was amazing! I knew how hard he had worked and how much his talks had improved with practice, and yes, I was one proud Mama!

Matt's speech is garbled

-yet so amazing!

Beginning in June, during Dave’s weekly meetings, Matt decided to practice presenting his old college engineering lectures, to discuss a professional paper he had previously written or a research article he had just read, or to talk about a topic of Dave’s choosing. Advanced repetition and attention to detail were required before giving each college lecture. For the first few lectures, he sounded robotic. Reading verbatim each slide took all his concentration. In time, he began to add a few additional albeit vague comments. By August, he could do a practice run, start to finish, speaking off-the-cuff. This allowed him to pay attention to making his presentation flow, connecting thoughts, and using complete sentences--versus bulleted statements. Sometimes, Dave had to ask him to be more specific, to explain something differently, or to point out that Matt’s information was incorrect.


As the summer progressed, language skills and cognition were the primary focus of our time and attention at home, and physical performance less. Even with our background in neurophysiology, it was, and still is, difficult for Mike and me to fathom the sequence of steps involved in rebooting the brain. Tasks that seemed relatively easy to us were as much a struggle for Matt to do as those we thought were more complicated. It didn’t appear logical.

When asked, Jessica explained that learning language skills and executive functions (a.k.a. cognitive function) follow a natural progression, whether as a child or as an adult, relearning those functions. First, one learns basic nouns and then verbs, followed by connecting words and descriptive words. Complete sentences come later. Early language focuses on needs and wants and doesn’t factor in situations or other people. Furthermore, the ability to express opinions, emotions, and preferences, which are higher-level skills, comes later. Therefore, she was excited that Matt was participating more in family discussions at the dinner table and beginning to express his preferences, such as not wanting to volunteer at the foodbank or for the summer lunch program but being willing to help at Dad’s church. And, although the way Matt sometimes verbally reacted to being corrected seemed disrespectful to us, it reflected another milestone and, therefore, was a reason to celebrate.

After almost two years of outpatient speech therapy, in July 2020, Matt opted to stop therapy because he believed he no longer needed it. In his assessment, he spoke “beautifully” (rating = 9), compared to the 4-5 Jessica, Mike, and I felt more realistic. Jessica supported his decision and, as always, praised Matt for his hard work and all he had accomplished. His gains in speech therapy were unprecedented. It’s not often she sees the trajectory of growth Matt continues to display beyond the first-year mark. She suggested that after taking the summer off, he might be enticed to resume therapy if therapy sessions incorporate his preferences and interests.

 

As speech therapy was on hold and the Brain Training Group had not resumed after the COVID outbreak, Kathy stepped in to work with Matt privately via bi-weekly, hour-long Zoom meetings. We collaborated to identify achievable goals and an action plan. Her new, personalized program was called Academic Tutoring. Wow! They focused on reading aloud, reading comprehension, verbally answering questions, discussing the book they were reading together (Harry Potter and the Chamber of Secrets, a childhood favorite), and summarizing what they had discussed each day. When Matt struggled to pronounce a word, Kathy taught him to disregard the suffix (E.g., ‘ing’ or ‘ed’) and focus on getting the root word correct before including the suffix. Often, Matt substituted an incorrect letter (E.g., ‘k’ instead of ‘g’ in the word ‘thing’). It was hard for him to let go of the incorrect word and work through identifying the correct word. Under Kathy’s patient tutelage, Matt learned this and other strategies for tackling words. According to Kathy, “he was like a sponge,” absorbing and applying everything he remembered.  

 

Matt’s sights were set on becoming a professor again—if not now, at least soon. But despite all of his improvements, Matt still had a lot of work ahead of himself to improve not only his fundamental speech skills but the higher level of cognitive and communicative flexibility required of a professor – such as the ability to get interrupted with questions or to build upon a discussion point made by a student. If only his self-awareness would kick in to enable him to accurately assess his abilities and what he still needed to master. But, in his mind, he was ready, and without insight, he wasn’t motivated to address any of our concerns because they weren’t valid.

 

After a three-month hiatus, Jessica and I convinced him to resume speech therapy to enhance his ability to engage his students during lectures and discussions, improve his voice quality, and minimize slurred speech. She coached him to speak loudly, project his voice to the back of the room, maintain eye contact, and add intonation, inflections, and arm gestures— those aspects of polished communication that give someone the desire to listen. They also worked on conversational speech. Matt was challenged to initiate a conversation and to keep the conversation going by asking follow-up questions or responding to another person’s comments. Afterward, he was invited to critique how he had done it.

 

Since I reported a year ago, Matt’s ability to text and email has undoubtedly improved, although often sentences were confusing, might not flow well, and needed clarification.