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HomeHealth & WellnessFinding Hope in Music: A Journey Through Autism

Finding Hope in Music: A Journey Through Autism

Discovering My Personal Soundtrack

“If anyone tells you a song is important to them, you should turn it up loud, close your eyes and really listen because at the end, you will know that person much better.”

-Kate Stewart, Drive

Autism: A Diagnosis

My son was diagnosed with Autism just shy of his 3rd birthday, but this isn’t about Autism. I will write about that another day. Now before you ask “High Functioning?” let me tell you that is rude and not appropriate. Do we ask people “Oh, is it the bad cancer?” My son is wicked smart, Autism stubborn, and completely nonverbal. You decide what level of functioning that is; I have bigger things to spend my time on. This story is about grieving a living child and the children I imagined I would have but won’t, since life doesn’t always meet our expectations.

The day my son was diagnosed, it was not the diagnosis per se that sucker-punched me in the gut; it was the sudden knowledge that the rest of my life would be nothing like what I had dreamed. As we discussed genetic testing, the probability of Autism in siblings, and the lack of any kind of certainty about my son’s life, I remember crying uncontrollably. The rest is a blur. In that moment, the soundtrack of my life was The Eagles’ “Wasted Time” and “New York Minute”.

Before Diagnosis

Wasted Time

My life was split into two lives that day: Before Diagnosis and After Diagnosis. I beat myself up for not being a better person and not enjoying every BD moment while I had them, as I watched that life dissolve into the next. I had recently started a new position at work and that, along with this new diagnosis, became my new life.

To cope, I told myself to just focus on the first day of Kindergarten and how to make that as “normal” as possible. I immersed myself in work and Autism. And wine. Work, Autism, wine, repeat. (Maybe “cope” was too strong a word.) I can’t clearly recall a lot of that first year AD, but I was working past “the dark place,” as we special needs moms call it. The soundtrack to my new life included Pearl Jam’s “Present Tense” and “Release”.

Present Tense

“I sat with my anger long enough, until she told me her real name was grief.”

-Unknown

I sat in the counselor’s office, angry and jealous. Angry at people who took their children’s small milestones for granted. Angry at my inability to find happiness. Jealous of parents whose kids had a diagnosis they could “beat”. Jealous of their ability to hope. Would I ever be happy again, or did I need to settle into this new, bleak normal? I was in trouble and knew it, but didn’t know how to stop it.

My brother and I have an indescribable love for music. Especially live music. The instruments are powerful, but the lyrics (and the emotion behind them) are what really move us. Growing up in the 90s, Pearl Jam is a staple for us. I went to my 10th show this year; it was my brother’s 30th. We don’t limit our concerts to Pearl Jam, of course, but they have provided background music for the last 20 years of our lives. So, needless to say, they hold a special place.

Release

In August of 2016, we flew to Chicago to see Pearl Jam play at Wrigley Stadium. Eddie and crew didn’t disappoint. We had pit tickets, and that night became one of those defining moments in life. The ones that make you choose to go right or go left, because you can’t just keep plodding forward.

They opened with “Low Light” and went right into “Release”. I can’t find words for the energy I felt surround me. Standing in that sea of people, singing as loudly as I could those lyrics that had become so meaningful to me; I could finally begin to release the pain of my own personal tragedy. Though there were thousands of people pressing in on me, it didn’t feel overwhelming or annoying. Instead, there was a powerful feeling of oneness—of connection. Personal space was no longer a concern, and everyone seemed to have an unspoken understanding of the people around them.

“That’s one of the great things about music. You can sing a song to 85,000 people and they’ll sing it back for 85,000 different reasons.”   

– Dave Grohl    

Given to Fly

That same summer, the documentary Gleason was released. (If you haven’t watched it, I highly recommend you do.) Steve Gleason is from Spokane, WA, and played in the NFL. He was diagnosed with ALS (Lou Gehrig’s disease) in 2010. He was very open and vulnerable about his experience, allowing filmmakers to capture the progression of his disease over a 5-year period.

During the concert at Wrigley Stadium, Pearl Jam had Steve come on stage and introduce his favorite song. In addition to being quadriplegic, Steve had lost the ability to speak. He made his introduction using speech-generating technology, and it was like an Epiphone (remember: nonverbal son). The song he chose was “Inside Job”, and I knew it was time for me to make a choice:  hope or no hope; happiness or no happiness.

I left Chicago on a high, knowing that I could feel happy again. I also left with a new soundtrack:  Pearl Jam’s “Inside Job”, “Given to Fly”, and “I Am Mine”.

I Am Mine

It took me another two years to find my path, get in my lane, however you want to describe it; and it definitely wasn’t a straight line. I battled some huge heartaches and made some big mistakes. I was in a difficult situation, but couldn’t find a way out that seemed better. First, I had to figure out I needed help. Then, I had to learn how to ask for it. The experience was humbling and made me want to be kinder to everyone and gentler on myself. In the end, I “came to terms” with my son’s diagnosis and found some peace.

“Some things in life cannot be fixed.  They can only be carried.”

Megan Devine

In that peace, I also found myself at the end of my marriage. Divorce, and especially divorce with children, is a tragedy that I would not wish on anyone. But when I truly sat with my grief and examined her, I realized that it was not just Autism that could not be fixed.

After Diagnosis

Something Good Coming

People like to say everything happens for a reason, but that is also rude and inappropriate. There is no reason for my son’s diagnosis unless it is that shitty things happen to really good people all the time. This might sound cold, but it is part of my shifted perspective. My son is a gift. His Autism is not. My son’s Autism is an assignment. I accept my assignment, but I don’t have to like it.

“Things are as they are, we suffer because we imagined different.”

-Rachel Wolchin

With my newfound perspective came a new soundtrack:  Brandi Carlile, “That Wasn’t Me”; Pearl Jam, “Lukin”; Tom Petty, “Square One”; Tom Petty and the Heartbreakers, “Something Good Coming” and toss in “Trip to Pirate’s Cove”.

Amazingly, the following year, Pearl Jam announced the Home Shows for 2018, and I went to see them three more times. Once again, I felt the energy of the crowd flow through me, and this time I actually felt happy. It was time for a new soundtrack!

The Home Shows, 2018

Alright For Now

So, what is the miraculous current soundtrack of my life now? Well, it’s full of Pearl Jam, of course:

  • Pearl Jam: “Crazy Mary” cover, “Amongst the Waves”, “Footsteps”, and “Unthought Known”.
  • Foo Fighters: “Something from Nothing”.
  • Tom Petty and the Heartbreakers: “Alright for Now”.

I wish I could leave you with a happily ever after ending, but life is messy. My current mantra is: Every next level of your life will demand a different you.

So, Rock On, and as Eddie would say, “Don’t be an asshole.”

Feature photo: Sascha Kohlmann via flicker

Read more…

DON’T SKIP THAT TRIP: 7 REASONS TO TRAVEL WITH KIDS

LORD HILL PARK: MUSHROOMS & A FAMILY HIKE

MOM TO MOM: I SUPPORT YOUR UNREALISTIC #VANLIFE FANTASY

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Lucy Mae
Lucy Mae
Lucy Mae has worked in social service for over 15 years, specializing in aging and disability services, and is currently a manager at her agency. She has a BA in Psychology from the University of Washington and an MSW from Eastern WA University. She is obsessed with live music (esp. Pearl Jam), quality beer, red wine, and good books, and has recently started writing. Lucy Mae is an Eastern Washingtonian through and through, born and raised in the Yakima Valley, where she still resides. Divorced, she is a devoted special needs mom and badass advocate for her son, who was diagnosed with Autism just shy of his 3rd birthday.
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