I’ve shared here before that music stirs my soul. It really does. Music can lift my spirits on a rough day and calm my soul in the midst of an emotional storm. So when I read that singer/songwriter Johnny Orr had released a new song, “We’ll Get By (The Autism Song)” to support Blooming with Autism, an organization which helps supply families dealing with autism with the necessary resources,I couldn’t wait to give it a listen. The tune is catchy but relaxing, so it put me just in the right frame of mind to soak in what was sure to be a new favorite. Here are the lyrics:
Maybe I don’t speak too well, but I’m coming outta my shell
And I like playing by myself, if you can’t tell
I like to go to school, yea I’m a miracle
And I’m glad to be alive
If you’ll wait patiently, well then eventually
I will understand the words that you’re saying to me
My autism, is like a prison, that I’m in
I share my heart, but only in my mind
I share my pain, when I scream at night
I can’t express to you what I’m going through
The only way is for me to cry
Mom, I see your fears through every single tear
Just to know I’ve caused you pain from inside of here
My autism, is like a prison, that I’m in
I share your joy, but only in my mind
You show me love, but just not in my time
Cause my reality, takes everything of me,
To make it through without a fight
And I know you love me when you hug me
And when I hear you pray to God for Him to heal me
Maybe one day, you won’t have to pay,
And I won’t have to see you cry
Maybe one day, I won’t be this way
Until then, we’ll get by.
I have to admit, more than a few tears were shed over this song, but I will also share that I wasn’t the only one crying. It was a mixed bag of emotions that was opened as we discussed how we felt about the song.
At first, I liked it, but saying that an autistic child likes to play alone, that doesn’t match up with what I’ve read in the book The Reason I Jump by Naoki Higashida, a 13 year old boy with autism. Naoki contends that it isn’t that children with autism prefer to play alone, but that they simply don’t know how to play what their peers are playing and because autism so heavily affects social interaction, it’s difficult for them to interact with other kids so they can learn. From our experiences with Ben, I can say Naoki’s explanation makes a lot of sense. When we join him in his world instead of insisting on pulling him into ours, we are met with giggles and laughter, smiles and eye contact that could fill neurotypical parents with envy.
Shortly thereafter, Orr sings, “My autism, is like a prison, that I’m in.” A prison? Really? Upon hearing that line, I suddenly got very defensive and began to formulate my argument that he obviously doesn’t know what he’s talking about. He doesn’t live the life. He doesn’t have kids with autism. He doesn’t have autism!! And then it hit me, neither do I. Sure, I have a son on the spectrum, but all that means is that I have a parent’s perspective of the spectrum. I’m not actually the one who is experiencing autism first-hand. Ouch! Busted by my own thought processes.
For the most part, I feel like the song does a very nice job of encapsulating some of the more pressing emotions of our autism experience. However, I really struggled over the idea that our son is in a prison. He sure seems to be a happy little guy, except when he’s not. And then, he’s really not. It got me thinking and because I’m not the one with autism, I honestly don’t know what’s like. If I were to be completely honest, I’d have to admit that sometimes it does feel like our boy is right there, just beyond our reach, and we just don’t have the keys to unlock the gate. Hmmm…perhaps like being in prison?
I struggled for the better part of the day trying to wrap my mind around this notion and because Ben isn’t developmentally able to listen to a song such as this and tell me what he thinks about it or how it makes him feel, I realized I was getting nowhere fast so I contacted my online friend, Brent Krauth. Brent is 28 and still living with his parents, but working very hard to gain his independence. He has ADHD, OCD, and autism. His dream is to be an inspiration to others and to help as many people as possible to understand autism.
I asked Brent what he thought of the song and specifically if he feels he’s in a prison.
He said he likes it and that yes, sometimes he does feel like he’s in a prison.
Following up, I asked if that was because of the autism or because of how others treat him.
“Both. But your son loves you very much.”
I found it interesting that Brent felt the need to convey the message that our son loves us. I think he must have known I was struggling with the implications of the song, but he is right, Ben loves us deeply. We can see it in the sparkle of his eyes, hear it in his laughter, and feel it in the way he leans into us for hugs. And we are even blessed to hear him say the words, “I love you.” Blessed indeed.
Brent and I chatted a bit longer about different aspects of autism. I asked him about the notion of searching for a cure for autism vs. the idea that there’s nothing to fix so there’s no need for a cure. His response was very profound and something I have truly believed for a very long time.
“Autism makes up who you really are inside. It’s not a disability, it’s a gift actually.”
Amen! It makes up who you really are and it’s actually a gift. And yet, Brent also said if there were a cure, he would take it.
All I can make of this is that when it all comes down to it, all each of us really wants is to be understood and accepted for who we are. Autism is so very complex that no one truly understands it and while awareness is growing, there is still a great need for acceptance.
There are so many blessings that have come to us as a family because of Ben’s autism and it really is so much a part of him that I can’t even begin to imagine him without it. All that said, there are some very difficult days, but that is all part of the experience.
While listening through the song the first half dozen times, I kept thinking this poor man (Johnny Orr) his heart is in the right place, he is trying to do a good thing, helping an organization that helps families of autism, and helping to spread awareness all at the same time, and yet, I know the Momma Bear Syndrome is fierce in this community. People are going to eat him alive because of some of these lyrics. And they have.
Post after post after post on various sites where the song is discussed attacks Mr. Orr for saying things like “My autism is a prison that I’m in.” and “I’ve caused you pain.” These are harsh statements. Ones that I, as a parent, would never want to hear my child say or know he even felt, but that fact is, that may very well be the reality. That is probably one of my greatest fears concerning autism is that our son will someday read or hear something that will make him think he is a burden on his family. That simply is not the case. Period. Autism sometimes makes things a bit more challenging for our family than for our friends, but there is no burden here. Yes, autism is very much a part of our lives and has a great deal to do with who he is, but there is so much more to Ben than just his autism. That is part of our job as his parents to make sure he is aware of all the amazing things that make him who he is as well – a big task indeed, but we are up to the challenge!