Formerly "Neil Stone Updates"

Sunday, June 28, 2009

I, Robot

Prosody is what makes speech make sense. It's the intonation, stress, and emotion that help us to understand what words really mean when somebody says them. If you've been lucky enough to be around Neil or to speak to him on the phone since he got his voice back in that magic moment on April 19th, then you know what it sounds like when prosody is missing. Although he has made some great improvements over the past weeks, he is still lacking the ability to show much emotion in his speech. His voice sounds monotone--without inflection. By the same token, he also has trouble understanding prosody in the speech of others. He may not be able to detect sarcasm or humor in your voice. That's one reason why jokes are hard to get. (Although, he did crack another funny himself the other day!*)

Without the understanding of prosody, or the ability to read non-verbal communication, it can be hard to develop or foster relationships. Neil's conversations are very literal. He often says just what he's thinking, and seems to be missing some of the filters that help to keep comments socially appropriate.
That being said, he's enjoyed some fun times with understanding friends recently--graduation parties, outings to favorite fast food joints, and just hanging out playing games or watching movies. Food, friends, and collecting Blu-Ray movies are his current passions as the recipients of his text messages are aware. Once again, I need to express my gratitude to those loyal companions who remember the other Neil and are cherishing this new young man, in spite of his social awkwardness. They are finding, as we are, that he still has an endearing innocence and charm.

* On Friday, Neil and I met with the school's child study team to plan for some evaluations this summer. After discussing some of the difficulty Neil has had trying to regain functions on his left side, the learning consultant expressed her appreciation that Neil was making progress and moving in the right direction. Neil quietly remarked that he wished things were moving in the "left" direction. Without facial expression or prosody, everyone missed the joke but me. Of course I had to share it, and it was fun to see him smile when his sense of humor was acknowledged!

Friday, June 19, 2009

Congratulations and Thank You to the BRHS Class of 2009

Dr. Riccobono told the seniors at their graduation practice Thursday morning that the ceremony wasn't really for them--it was for their parents. He was trying to impress upon them that pranks and jokes during the program would be a disservice to attending loved ones, but he had said the same thing to me earlier when I thanked him for making it possible for Neil to be involved. I wasn't sure how much he would be getting out of the event, but I knew that Scott and I would be touched, as we already were by the support Neil was being given throughout the graduation practice proceedings.

Neil had been showing some signs
of unusual (for him) anticipation about his big day. A few times already he had volunteered that he couldn't believe he was graduating--just the kind of comment any 18-year old would make as he approached this mile stone. I was feeling hopeful that amidst all the confusion of black robes and processionals, Neil would actually be moved by the significance of this day.

Nothing could have prepared him or me for what actually happened last night. As we sat through the rapid readings of the 691 names, I tried to decide if I should shout or cheer as Neil's name came up. What if I were sitting near the family of the next graduate in line and they couldn't hear their own child's name because I was making such a to-do? I decided a quick clap and woohoo wouldn't hurt if I started at the same time his name was read. My heart beating in anticipation, I no sooner began my tiny hoopla when the gymnasium erupted. Every student on the floor stood up simultaneously and cheered for Neil. Even the audience in the bleachers began to stand. Names were halted for nearly thirty seconds (an eternity for me) as his ovation was given.

I don't know that I have ever been so moved by an event. The outpouring of love and support for our son amazes me even now as I sit here typing and remembering that moment. Apparently students had preplanned this, but I was not aware of it. Dr. Riccobono, who was helping Neil maneuver back to his seat, stopped him and pointed out the amazing spectacle. A huge, incredulous grin lit up Neil's face as he turned to see the crowd. As soon as he got back to his seat, he pulled out his phone to ask me why his classmates had done that. Before my slow fingers could text back, a friend had already answered him. "Because you're awesome," is what he said. I had to agree.

Thank you again, to any and all who participated in Neil's recognition. Thanks to all the school personnel who assisted Neil on his special night. Thanks too, to friends and classmates who stepped in when needed. I have not seen that young man smile that much since January. I know we haven't felt this good for a long, long time.
P.S. If anyone happens to have a copy of a video of Neil's special moment, we'd love to see it. We were caught unprepared that night!

Update:  Here's a link to a video.

Friday, June 12, 2009

Social Caterpillar*

*or "Facebook: Blessing or Curse?"
This is my low-tech snapshot of a snapshot of Neil with his first girlfriend, Lauren. They were preschool buddies, and when Neil saw her at the park one day, he fell to his knees and started eating grass in an effort to impress her. He's always kind of been that way--he loves his friends and he'd do anything to make them laugh.

Of course, lately the laughs have been hard to come by since he's a little short in the humor department. But he still loves his friends and has really missed being with them at school each day. Dividing his time between hanging with Mom, and therapy sessions with the sweet elderly folks at Kessler is just not filling his social needs. He makes up the lack by texting. His thumb flies day and night, almost non-stop.

High-school students are busy this time of year. His peers are getting ready for finals, graduation, summer jobs, and college. As they become overwhelmed with Neil's messages, I think they are finding it harder to respond to each one. So he is looking for more people to correspond with. Enter, Facebook. Neil hadn't shown much interest in it as the screen is hard to see, and the website very busy and confusing. But when he finally gave it a try and realized he had 71 friend requests, he decided it might be worthwhile.

So now he has some new friends, too--friends that we don't know. I hope they are as kind-hearted as the ones who have been so loyal throughout his recovery. Some of these new kids don't know his circumstances. His abilities to pick up on social cues, to judge, and to understand subtleties aren't what they used to be, so I worry that he might get hurt.

On the other hand, as Neil continues to sharpen his mind and skills, these social interactions should be good for him. Communicating with others has got to get better with practice, right? He's reaching out--trying to emerge, and we'll see what beautiful creature develops.

Friday, June 5, 2009

Precisely My Necessity

It's real! No more finger props to hold up a sagging left side. This is a true smile! Interestingly, he can't do it when he's trying. There has to be something that touches his funny bone to get the ear-to-ear grin we've been waiting for. I actually had to say something embarrassing to get this one on film. Which leads me to another significant thing about this event--Neil is getting his sense of humor back. He's not to the point of jumping on tables in his banana costume yet, but it's starting to feel like we're seeing the old Neil a bit. Happy day!

Neil took a trip to school today to pick up his yearbook. He ate lunch in the cafeteria (two pieces of pizza) and sat with friends who came over to sign his book. It was great to see he was voted "Biggest Kid at Heart," and we found a picture of him in his infamous banana suit. If that doesn't bring a smile to a person's face, I don't know what will!

"They might not need me — yet they might —
I'll let my Heart be just in sight —
A smile so small as mine might be
Precisely their necessity —"
Emily Dickinson

Monday, June 1, 2009

Pomp and Circumstances

Middle School Graduation
June 2005

Once again, Neil will don cap and gown and join the processional with his classmates. According to school authorities, Neil is just one semester of Lit IV shy of officially graduating, so they are allowing him to participate in the ceremonies with the understanding that he will be finishing his class eventually.

Four months ago, I never would have guessed this would be possible. After spending long, long days in the ICU with our still and silent son, I would sometimes come home at night and sit in his room and cry. The sight of his backpack in the corner and textbooks on the shelf were painful, as were the letters that kept arriving from the school to all seniors about preparations for graduation.

As Neil began to "wake up" from his state of impaired consciousness, he slowly became aware of what was going on in the world without him. Visiting friends talked about senior games and activities. He knew he missed the prom. So we tentatively called the school district to ask if it would be possible for him to have at least this one positive memory from his last year of high school. School and district personnel were on Neil's side and took it through the appropriate channels to make it happen for which we will be ever grateful.

What happens after graduation is still up in the air. He dreams of attending college, so we're working toward that end. The school district can offer him some support and training for up to two more years, so we'll be taking advantage of what is available there. Evaluations this summer ought to get us going in the right direction.

Throughout our experiences of the last months, we have cried much, prayed often, and mourned for what we envisioned his life would have been like, but we never lost hope and we never will. Faith in a loving God, time, and lots of work by many individuals can make miracles happen.