Confessions Of A Music-Loving Special Needs Momma

Words by: Michelle Leigh

I have a secret …

On the surface I am a wife, a mother of two, and a full-time professional in a fairly high-stress career. I am a college graduate and a home-owning, tax-paying citizen. I do all the “typical” mom things: shuttle kids to and fro, cook dinner, pay bills, clean the house — really exciting stuff, right? Then there are the not-so-typical things. I have been a mom since I gave birth to my first child at age 19. Having my daughter when I was still young made me grow up quickly. My second child, a son who is now age 5, has global apraxia and sensory processing disorder. I spend a good amount of time researching therapies, organizing our local apraxia walk, trying to build a support system for families, and even maintaining a website to help fellow special needs families.

My day-to-day life can be overwhelming. Having a child with special needs can make you feel as if you are always carrying the weight of the world on your shoulders. There are doctor’s appointments, local and out-of-state therapies, Individualized Education Program meetings and learning strategies implemented at home. However, I am Type A in almost all aspects of my life. I try to give 100 percent to anything I do and refuse to do anything half-assed. Unfortunately, I tend to forget about myself while taking care of everyone else. That frequently leaves me feeling burnt out.

So about that secret. I am an addict.

Oh, not the drug type. Don’t worry. I am a full-fledged live music junky. I. Cannot. Get. Enough. I know that most people go to concerts once or twice a year. Me, I anxiously await Summer Tour, Fall Tour and Festival Season show announcements. I strategically plot how many shows I can get to while still maintaining my mom and work duties. It’s a balancing act with travel, tickets, flights, money and how to not miss a “must-see” tour. Honestly, for me they all seem “must-see” – hence the addiction. I will follow the same few bands multiple times a year while adding in numerous other shows to fill in the gaps.

I must go to shows. They remind me that I am alive.

I get lost and “surrender to the flow,” as they say. Live music keeps me going. It is the air I breathe. It gives me the strength and energy to return to my “real” life. If it sounds trivial and irresponsible to some, that’s OK. To those, I would say you don’t get it. For those that do get it: thank-you! I feel your energy when you are there. You refill my cup and reignite my soul so that I can truly escape. I’m not obsessing over therapists, the latest setback, the most recent ER trip, medical bills. Instead, I just think about the jam, feel the beat, vibe with the crowd, and usually end up barefoot at some point.

For as long as I can remember I have been called an “old soul,” or told I was born in the wrong decade. I have spent countless years listening to bands that I am too young to have ever seen live, and I live by Grateful Dead mottoes as if they are a foundation for my life. I get a rush out of chasing a Phish song, eagerly hoping each show will be the one I finally get it. Seventeen years and I am still chasing “Waste!” The thing that most people don’t understand is that I am just as excited for random people in the crowd when it’s obvious they have finally caught their song after a long chase.

At JJ Grey & Mofro shows I can get lost in his passion, his voice sings to my soul. Being from the South, he can single-handedly remind me of the state in which I grew up and its dirty, funky roots that no one else in the United States sees. No matter the band or how far I may have traveled, when it comes to show day I instinctively drop my Type A personality and embrace my free spirit. It happens so naturally. A friend recently told me, “I see your fire when you are at shows.” That was eye-opening. It reminded me that I must take care of myself, and to do that I need music. It is a wonderful moment when I turn from “Michelle-the-burnt-out-special-needs-parenting-momma” into “Michelle-the-free-spirited-dancing-woman” without a care in the world. It is a true escape from reality with no barriers.

My mental health and overall happiness are dependent upon live music. Some people run, or paint, or play sports. That’s their release. I will spend days camping in a tent, eating out of a cooler and bathing in a river to get my fix. You will never hear me complain about giving up my air conditioning and king-size bed for an air mattress and the Florida humidity. I am fortunate that my husband supports my habit even if he is one that doesn’t quite “get” it.

It is clear that we are raising a little “rager” as well. Apraxia prevents individuals from being able to speak and process correctly. Think of it as similarly to a stroke – it has the same effect even though it is idiopathic. There are issues with delayed language development, difficulties with fine motor movement and coordination, and word confusion, among other challenges. Since my son, Ryder, wasn’t my first child, I knew there was a big issue long before the professionals did. However, before Ryder could speak he could hum … quite well actually. He is a mini-Deadhead and already a Phish fanatic. He will hum along and try to sing his favorite songs. Obviously, the Dead’s “I Know You Rider” is a staple, and he’s obsessed with Phish’s cover of “Roses Are Free.” It is therapeutic for the two of us on rough days to put on some great jams while we dance, hum, and sing. Ryder is aware of his struggles and works very hard to overcome them. Music, even at the age of 5, helps him release. Music is an amazing thing for those of us that feel it. I know Ryder feels it.

I am fairly certain that the moms in the carpool line, the CEO with whom I am working on the next deal, the family I am helping fight to get the best services possible for their child all have no idea about my secret … and that’s fine. Still, if you see me on the floor, come share a song and ride the wave with me. I couldn’t be the person that I am without the bands and the fans to energize my soul. To all of you, thank-you.

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Michelle Leigh is proud to be a fierce advocate for the causes in which she believes. Since 2014, she has made it her lifelong mission to educate people on apraxia, with which her second child was born. She wants his voice and that of every other child living with apraxia to be heard. Leigh lives in Jacksonville Beach, Florida with her husband and two children. Visit her blog at www.apraxiamommabear.com.