Yesterday I had an article of mine published on The Mighty’s website. If you aren’t familiar with the site read this for a full explanation of who they are and who they represent. If you are familiar with them, then you already know how amazing their content is and why I feel so honored to be a contributor for them now.
I would absolutely love it, and you, if you would take the time to go over and read the article if you haven’t already. As a writer with a book on the horizon, it is imperative that I build a platform for my work. The more readers I have, the more likes and follows, all of these add to my platform and will help me out in the long run.
The edits on my book are nearly finished and I will be submitting them to an agent. If all goes well, the changes will be accepted and she will take me on as a client. The story on The Mighty is just one of the many parts of my bigger story, my book, He’s Not Broken.
Stick with me guys. I have a lot to say. If I play my cards right, then maybe one day I’ll be able to meet my supporters in person on book tours. It’s a dream of mine.
If you have a moment, please head on over to The Mighty and check out my piece on Tourette Syndrome.
As I was knee-deep in edits today, my flow came to a screeching halt when I was faced with a particularly difficult passage. It was difficult on two accounts. First, it recounted a very emotional day in my life during a time when I was beginning to realize that something was different about Jake. And secondly, a beta-reader made a note that said the writing didn’t necessarily convey what I had hoped it did.
After reading the passage again, I realized what she meant. The behaviors that I highlighted weren’t strictly those of a child who was exhibiting signs of a deeper issue other than being frustrated. She asked me to consider rewriting so that the reader gets a clear picture that something more is going on.
Determined to write a stronger passage, I settled in and readied my hands at the keyboard. And I sat. And I revisited that day in my head. And I sat some more. That’s when it dawned on me that it was time to bust out my jazz hands – that is, to act out the passage as if it was a scene from a movie with me being Jake.
So I stood up and imagined a wall of choices in front of me. I am five years old. I have to make a decision. There are too many choices. I have to pick one. But what if I pick the wrong one? What if there’s a better one? Out of character, I noticed that I was pacing the floor. Okay, that’s a visual to add. I knew I was onto something.
I just needed to act it out – to feel physically what Jake was feeling emotionally so that I could help the reader visualize Jake’s mental state.
I went back under. So many kits to choose from. So many choices. What if I choose the wrong one? I let that phrase loop in my head until I felt my body tighten and my arms pull close to my sides. I imagined my eyes darting nervously from one kit to another. I feel pressure. I feel an internal tension that causes me to start breathing heavily. It’s too much. I feel like I might explode. I have to decide. My mom is waiting. I have to pick. She tells me to just pick a fun one. But which one is the most fun? Is it that one? Or this one?
It’s just a science kit she says thinking that will make it easier. But what she doesn’t understand is that my mind is stuck. And I am stuck in my mind.
I feel tears start to come and I know that I have it. By allowing myself to act it out, feel the emotions and notice how my body reacted, I am closer to knowing how Jake must have felt at that time. By moving and paying attention to how I’m moving, I can now write it down.
I want my book to read like a movie. I want the visual cues to be so spot-on that the reader can create the scenes in her mind. So I sit down and paint the scene word by word. And cut. Act 2, Scene 1 done.
Tomorrow I will tackle another scene and just like Mr. Sondheim wrote bit by bit I will complete my book.
Art isn’t easy
Even when you’re hot
Advancing art is easy
Financing it is not
A vision’s just a vision if it’s only in your head
If no one gets to hear it, it’s as good as dead
It has to come to life
Bit by bit, putting it together
Piece by piece, only way to make a work of art
Every moment makes a contribution
Every little detail plays a part
Having just a vision’s no solution
Everything depends on execution
Putting it together, that’s what counts
-From Stephen Sondheim’s musical Sunday in the Park with George
*This post is honest. It is painful to write, but I feel that it needs to be said for those who can’t say it.
Jake on a very bad day
My son bears the weight of Obsessive Compulsive Disorder (OCD) daily, but this post is not for him. This post is for the parents and loved ones who must learn how to live with OCD as well. I do not wish to take away from the burden he carries; believe me, I have seen him crippled by this intrusive, invisible bully and I wouldn’t wish it on anyone.
Half a day’s worth of gloves
But I am here to acknowledge the others who are involved in this journey alongside them. I am here to remind you that we, too, face a bully. However, our bully is easily recognizable every time we pass a mirror.
How often have you retreated behind the safety of a closed, locked door and screamed into a pillow? How many times have you been blinded by the hot tears of frustration as you drive anywhere just to get away? And how familiar is the feeling of guilt that gnaws at you for all the times that you lost it, yelling at your son out of anger? The emotional turmoil is unrelenting.
I have slammed doors and punched pillows.
I have felt so much pent up rage that I’ve resorted to hitting my thighs with fists clenched so tightly that my nails have drawn blood, just so the bruises on my legs hurt more than the ache in my heart.
I have escaped the tension with a few too many glasses of wine. And then slept through my sadness.
I have sat outside my son’s door listening to the quiet of him sleeping, pretending that he’s just like everyone else. Enjoying the silence maybe a bit too much.
I have driven to an abandoned lot, turned the music up as loud as I can and screamed until my throat was raw and I was out of breath.
And each time I’ve berated myself with ugly, angry words.
The same kind of sharp words I have heard my son use on himself on his worst days as he curls up in his chair, the chair that is off limits to the rest of the family because we aren’t clean enough, and cries until he has nothing but shadows left inside him.
The same words I save for the days when I hate myself most. You are worthless. You are a burden. You can’t even help him. Loser. I can’t do this anymore.
There are times that I think if only I had done this instead of that. Said these words instead of those. Maybe things wouldn’t be so bad for him. Maybe he would be better. Maybe I’ve made it worse.
I make myself physically ill worrying over the things that I think I did wrong. But the truth is that on any given day, I’m doing the best I can. My best may not be perfect, but I. Am. Trying.
There is a song in the Sondheim musical Sunday in the Park with George that really resonated with me one day when I was out trying to walk off the voices in my head that were telling me how wrong I was.
Stop worrying where you’re going – Move on.
If you can know where you’re going, you’ve gone.
Just keep on moving.
I chose and my world was shaken- So what?
The choice may have been mistaken,
The choosing was not.
You have to move on.
As parents and caregivers of kids with special needs, it’s easy for us to forget that the best thing we can do is to keep moving.
Some days we will move backwards, tripping over yesterday’s mistakes. Other days we will move forward full of a hope we can barely see. But the only thing that matters is that we are moving. We may not know where we are going, or how we are going to get there, but we will get there.
Yes, we are exhausted. We are overwhelmed. We are heartbroken. We are afraid. We are angry.
In the midst of my own personal revelations, I’m still struggling to deal with the pain of someone very close to me. My oldest son was diagnosed with Tourette’s at age six and OCD, anxiety, and depression at the age of eight. Over the years he has faced many challenges, all of which he has overcome. But when he is in the middle of a particularly bad one it seems that there is no light, only tunnel. And that’s where he is today.
My heart breaks for him because, although I know I can encourage him, I can’t “fix” his issues, only he can. As a parent, this is the worst feeling. I’ve always been able to fix the outside hurts, or find someone who can. It’s the inside hurts that prove to be the true problems.
Lately, it’s the social anxiety that is slowly killing his spirit. Warner and I were sitting on the deck talking the other day, amidst the wisdom of the whispering Georgia pines, and something he said stuck with me.
The night before, he and Jake had done some serious talking it out. Mostly Jake listening while Warner talked. I thank God that we are a close family, that at least Jake has that. So as they talked Warner told him he needed to “be where the people are”.
Of course, there is no way we could understand Jake’s social anxiety, but what we do know as adults who have been in the world a bit longer, is that most things are temporary. So we continue to encourage him, to suggest things that seem impossible to him right now. Things that he wants so badly.
So when Warner told me what he said, “be where the people are”, all I could hear was Ariel, The Little Mermaid, singing so sadly about her desire to, yep, you guessed it “be where the people are”, and I nearly lost it.
I wanna be where the people are
I wanna see, wanna see them dancin’
Walking around on those – what do you call ’em?
Oh – feet!
Up where they walk, up where they run
Up where they stay all day in the sun
Wanderin’ free – wish I could be
Part of that world
When’s it my turn?
Wouldn’t I love, love to explore that shore up above?
Out of the sea
Wish I could be
Part of that world
Because, for my Jake, he wants so much to be a part of a world that you and I live in every day without giving it much of a second thought. We go to the store, interact with the cashier, walk among a crowd, and we hardly even notice.
But it’s a struggle for Jake. He feels like he is being watched, and judged. Even going through a drive-thru is difficult because it requires interaction. Think about all of the little interactions you have experience on a daily basis. Now, imagine doing those things and feeling like you are being evaluated on each and every move you make, every word you say, all the while knowing you are inadequate – so really, what’s the point?
Imagine wanting to meet people, to have friends, to socialize, but being too afraid to talk because you don’t want to be criticized, so you remain alone…and miserable. It’s not a choice. It’s a prison.
And watching a person that you love, that you respect, and that you see so much awesomeness in go through this is heartbreaking.
All I can do is love him. All I can do is be there for him, and believe in him. The rest is in his hands. But I will be holding those hands, and helping him every step of the way no matter how long it takes. Even though he may feel lonely, I can promise him this, he will never be alone as long as I’m around.
The following is an excerpt from my upcoming memoir, He’s Not Broken: A Mother’s Journey to Acceptance. My son Jacob was diagnosed with Tourette Syndrome at the age of six, and OCD at the age of eight.
Just when we thought we had seen the worst of Jacob’s urges, a new one emerged that completely changed our passive course of action. We had a wake-up call that brought us to our knees. Our child was sick and we couldn’t help him on our own.
Lately, Jacob had been struggling with a compulsion to put small objects in his mouth, and to touch electrical cords to his tongue. It was as if I had a toddler again. At first he was able to find ways to “trick” the urge by touching the object to his lips.
Although we knew it was something he couldn’t help, we were lost and scared about what could happen, so we reverted to threatening him which only made things worse. With each threat, Jacob’s stress level would rise, which would, in turn, make his tics and urges rise as well.
I walked into his room one night, and was floored by the measures he had taken to protect himself from this thing that controlled him. Sitting on the floor playing with his beloved Legos Jacob looked up at me with his mouth covered in Scotch tape. It took a minute for me to realize why he had done this. I had to walk out of the room so that he couldn’t see me crying.
I went into Warner’s studio where he was working on an illustration of Pablo from the Backyardigans.
“Jacob has his mouth taped shut,” I managed to say.
“What? Why?” he asked.
“So that he can play with his Legos and not worry about putting one in his mouth. He can’t even play like a regular kid, Warner.” I fell apart.
