Client Spotlight: Meet Alex
No one laughed harder than Alex. I’m talking, throw your head back, a grin as wide as your face, eyes closed, shaking laughter. It could be set off by anything–the way an instrument looked or sounded, when he gleefully and continuously refused to hold an instrument and flung it down onto the floor instead, or simply because he was happy to make music.
Every Tuesday night for a year, I (Macayla) visited Alex in his home, and every Tuesday, I’d end my 12 hour shift smiling because Alex always reminded me of the value of love, human connection, and the joy of sharing music.
The following narrative comes from an interview with Alex’s mom, Shari.
Who was Alex
Alex had a rare genetic disorder with an unbalanced chromosome. Because of this, he experienced cognitive delays, stunted growth, progressive seizures, loss of mobility, medical complications, and required a trach. In the words of, Shari, “He was a spitfire. He could be mischievous, and, boy, he was stubborn as he could be! He had a heart full of love and always smiled, but he did like to get in trouble. Whenever he’d try to get away with things, he’d get this look in his eyes … but he always tried his best in whatever he could do, and he just never gave up.”
Alex and Music
Alex LOVED music. All music. African drums to Elvis … Mozart to Guns and Roses. You name it, He loved it. He especially enjoyed playing the piano, bells, and canary sticks; and his playtime always included some kind of music. Shari described music’s two-fold place in Alex’s life: Music encouraged and motivated Alex to interact with others, and also served as Alex’s “place of peace … where he could just be Alex.”
Alex and Music Therapy
Alex attended school at Lyle Torrent, a public special needs school in Jackson where he first began receiving Music Therapy services. Alex was later able to receive the Children’s Waiver which provided him with Music Therapy Services at home through Harmony Garden. Alex at times also received Music Therapy during his hospitalizations.
I asked Shari to describe Alex’s experience with Music Therapy:
“He looked forward to having it. You could tell. He loved it so much that he would listen better, and it was kind of like his reward. It helped him to develop listening skills, eye contact, and ASL, and motivated him to practice fine and gross motor skills through playing instruments. I also knew that if he was having issues, music would calm him down. I’ve always been a big music person. I listen to a lot of music myself, so it helped make the atmosphere in our home more relaxing and Alex more peaceful. He was always laughing. It made him happier. Music was what made Alex interact the most. He did not like OT or PT at all. He would do it, but he didn’t want to. He was stubborn about the others, but he didn’t ever want to miss his Music Therapy.”
Sidenote: And boy was Alex stubborn…
One week when I (Macayla) was sick, I missed a session with Alex. He did not need words to let me know upon my return the following week that he had not been happy about it. He did not smile, make eye contact, or hold an instrument for any amount of time before throwing it on the floor. Alex made me grovel! (And we could all tell he enjoyed it far too much) But then he got that mischievous look in his eyes, threw his head back, and laughed. He forgave me.
Would you recommend Music Therapy?
Shari said, “Absolutely. It’s so therapeutic for special needs children as long as they don’t have a negative auditory response. He always smiled. His smile was just so genuine, and music brought that special smile out in him. Music just lit him up and made everything better. Alex found peace and pleasure in music even until his passing. Music was a peaceful way for Alex to say goodbye to everyone and a comfort those who loved him”
Unfortunately, Alex did pass away in the Fall of 2019, just after his 16th birthday, surrounded by music, warmth, and the love of his family who loved him so immensely. Shari notes, “The house is quiet without Alex, but every time the music is on, a piece of him is still alive. He would want us to live our life to the fullest like he did.”
No matter what we’re going through, we all have the choice to be an Alex–to throw our heads back, laugh, and find joy in the music that surrounds us.
Special thanks to Shari and Rob Hydenburg for allowing us the privilege to know and work with Alex and to share some of his story here. Names and stories have been shared with permission.