Unmeasurable Progress, Part II

On January 18, 2015, I wrote the first part of this blog entry. I talked about the tools professionals use to measure Caleb’s progress and chart his intelligence. I also talked about how Caleb has his own tool box and that his is the only one I really care about.

A few weeks ago, I was having coffee, watching the Today show while Caleb waited by the front door for the bus. Queen Latifah was being interviewed and was asked to name her favorite karaoke song. She belted out a few verses of Bon Jovi’s You Give Love a Bad Name. Cut to two seconds later and Caleb had found the song on my phone and was playing it. I keep saying how intelligent he is–despite what our conventional intelligence testing keeps trying to tell us.

Caleb has a diagnosis of hyperlexia, which means that he memorizes the shapes of words, rather than learning them phonetically. I was initially alarmed at this diagnosis, but the therapist we were working with quickly assured me that 90% of what typical adults read is sight reading—the same theory as hyperlexia. Most words we read often we don’t even bother to sound out. We just understand them and move on.

What Caleb has learned to do is memorize song titles from the XM console in my car. He then comes home and plugs those letters into YouTube and listens to his favorite music. He does the same thing with DVD titles, finding clips of his favorite parts of movies on YouTube.

If you meet Caleb, he will immediately ask you three questions: 1) When is your birthday? 2) What kind (brand) of car do you have? And 3) what color is it? When he was very young, he memorized all of the logos of cars and could recite them perfectly. He did this for years before I caught on. And more often than not, he will later remember the birthdays of people he has asked.

Years ago our geneticist told me that autopsies of those with 22Q Deletion Syndrome show that their brains have white matter where there should be grey matter and vice versa. What this translates to is that Caleb has cul-de-sacs in his mind where we have freeways. Some information can never get through.

But… he has found this workaround, this marvelous workaround to help him function in the world. He knows every month by name and loves to change the calendar. He often wakes up at midnight and changes all of the calendars in the house. He understands how to work my iPhone and his iPad with startling speed. He completes 500 piece puzzles in minutes and he does word searches like no one I’ve ever known.

Last year, Caleb was asked to join the Greenville Greeters, a group of people of all ages with disabilities who attend his day program with him. This group goes to corporations, where they wave and shout with great enthusiasm to welcome people as they arrive for work. I could never have conceived of such a joyful use of Caleb and his friends’ social talents. The Greeters website states: “This interaction fosters communication, breaks down barriers and can be informative and transformative to those who participate.”

Caleb has learned to adapt and thrive in our world, which many people, including myself, often find incredibly difficult to do.

I’m writing this for those other parents out there, the ones of young children who have recently been diagnosed with 22Q or any other disability. I’m writing for any parents-to-be who have been told there is something wrong with their baby. I want them to know that there is learning in our babies’ brains, even if it can’t be stripped down to an IQ score or reading level. There is no way to know what strengths your child will be born with, what personality traits they will have that can lead them to find their own workarounds. There will be challenges, some that will knock you to your knees, but there are also miracles waiting to unfold before you like swan wings.

Just this week at the Tony Awards, Ali Stroker became the first actress who uses a wheelchair to win the award for Best Supporting Actress in a Musical. She is the first actress with a disability to win a Tony Award ever. Paralyzed in a car accident at age 2, Stroker didn’t let her physical disability dissuade her from pursuing a career in musical theater. In my life, I’ve let lesser dreams die due to my own laziness, so I am humbled and enchanted by Stroker, who said in her acceptance speech, “This award is for every kid watching tonight who has a disability, who has a limitation or a challenge, who has been waiting to see themselves represented in this arena,” she said. “You are.”

Stroker has said, “When I began to sing, I just felt so free. There was like no limitation.” For her, and for so many of us, along every ability level of humanity, music is a conduit that frees our souls and fills our minds. How lovely that Stroker is being recognized for her remarkable talent.

Last week on America’s Got Talent, Kodi Lee, a 22 year-old young man who is blind and has autism, awed the judges and audiences everywhere with a spot-on performance of A Song For You by Leon Russell. He not only sang in perfect pitch, he also played along on piano. Lee’s voice and performance would have been remarkable on their own, but knowing how much he has had to overcome in his life, he took my breath away. The audience and judges stilled, so I know it affected them as well. Gabrielle Union even awarded him the coveted golden buzzer.

We will have gained so much when we leave out of Ali Stroker and Kodi Lee’s descriptions that they have a disability of any kind. We will all be richer when we realize that we are all part of this wonderful, tragic, magical, heartbreaking ball of humanity that loves and cries and laughs and fears. Distilled by whatever labels others wish to impose, we are all brothers and sisters.

When I was pregnant with Caleb, his older sister Sophie was still a baby. During pregnancy and her infanthood, I played lots of Vivaldi, Yanni (groan all you want but I still love that music), Kenny Loggins’ Return to Pooh Corner and various pop songs on the radio. I had read that music in the womb makes for a smarter baby. So I played music constantly.

Sophie went on to play the viola wonderfully. She met her husband Al, also a violist, in her high school orchestra. She was fortunate enough to play at Carnegie Hall on a high school field trip. She plays guitar and sings like Joan Baez. Whenever she would practice, Caleb would sit outside her room, his back to the wall next to the door, and just listen. For hours. He absolutely loved her concerts.

Sophie later told me that Caleb especially loves music played in the key of G. I’m not a musician but after she told me that, I could hear similarities in the music he loves. I have no doubt that if Caleb’s brain was not affected in just one spot, he could have been a great musician like his sister.

When Caleb heard Queen Latifah singing and found that song so quickly, I was flushed with the realization that music has plowed through one of those cul-de-sacs in Caleb’s brain, crumbling it into a dusty pile of old bricks. Music allows him to muse about his emotions and communicate in ways his mind can’t on its own. Like Ali Stroker stated, music makes him feel free.

There are so many ways we connect as humans. Language is the largest, and therefore the simplest way that we try to measure intelligence and progress. Music, in its composition, boils down to math, with the construction of tempo and notes. Math is a language that we always use to measure intelligence. Therefore, my Caleb, and those like him who understand music deeply in their minds, might be the most intelligent of all of us.

I don’t think we could ever begin to try to manage to understand or measure that kind of progress.

 

To learn more about the Greenville Greeters, click here: Greenville Greeters

To watch Ali Stroker’s Tony Awards acceptance speech, click here: Ali Stroker’s acceptance speech

To watch Kodi Lee’s AGT performance, click here: Kodi Lee AGT

Photo credit: Better Homes and Gardens