“Oh I don’t know, Tourette’s can be kind of fun. I knew someone with TS and he would throw the “F” word around all the time,” the stranger said with a laugh.
Silence. Suddenly I was bombarded by the image pain of Jake sticking his finger down his throat hundreds of times a day. I was reminded of the time I stood in the kitchen doorway, unknown to him, as he repeatedly punched himself in the stomach, tears running down his face. He was six. I recalled the angry stares of strangers who judged him every time we were out. And I felt my words stick in my throat as they so often do.
Sadly, this is a scenario that has played out in many forms over the years. I have since learned to speak out for Jake and other people like him who live with the suffering that accompanies Tourette’s and OCD. I can assure you none of them are having fun.
When Jake was diagnosed I was under the impression that his biggest problem would be peer bullying. Kids can be cruel. What I have learned instead, is that adults tend to be the worst bullies of all.
Over the years I’ve wondered about this. Why, when adults have so much more life experience, are so many lacking in compassion? How do they justify such insensitive remarks?
As adults we tend to inhabit our own space, both physically and mentally. The longer we remain earthbound, the easier it is for us to grow cynical and care less and less about the “big” world, concentrating instead on our personal lives. Unless a person’s life has been touched in some way by disability, and special needs, I think they just don’t get it. Instead, they are driven by the media’s skewed stereotypes.
All people with Tourette’s curse. False. Less than 10% are afflicted with coprolalia – a tic that causes them to use obscene language. I once met a twelve year old boy who was deaf because one of his tics was to box himself in the ears. I’ve seen a fifteen year old girl in a wheelchair because one of her tics was squatting while she walked. Hilarious,right?
All people with OCD are neat and are germaphobes. Just give them some hand sanitizer and all is well. False. Jake’s OCD immobilizes him at times, making him unable to leave the house. He struggles every day with repetitive thoughts and fears, causing him severe social anxiety. Good times, yeah?
Clearly, there is no humor in these conditions or any others.
So what’s different about how children process these differences. I think that children are simply more connected to the world than we are. They are newer beings on this Earth and are naturally curious. They haven’t been media-trained in the ways of callousness. We have so much to learn from them, and such a responsibility to protect them from becoming hard-edged.
But I think it’s important to note that compassion is more than just caring. As connected Beings we all need to practice empathy more than sympathy. And if we allow ourselves to reconnect with our spiritual side (not religious – that’s completely different and man-made), we will realize that it’s our natural state because we are all connected.
*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.
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.
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.
Lately there have been several posts on suicide awareness. I found this post from last March and felt it appropriate to reshare.
Previously Posted on March 26, 2016
You know how you hear a song and it’s just the right song for that moment? The lyrics speak to you on a soul level as if the singer is in your head and giving life to your deepest thoughts. That happened to me today.
I’m a huge fan of Spotify and their weekly Discovery playlist. I was having a bad day and decided that I needed some new music, so I decided to listen to Spotify’s suggestions while I was driving. The first song to play was “that” song. I nearly pulled over to the side of the road just so I could let the lyrics wash over me completely. Instead, I grabbed the pen I keep handy and scribbled the name of the song and artist so I could explore them later. So far today I have listened to the song at least 20 times. Each time I get lost in the experience.
How is it that a song can reach a part of you that nothing, and no one else can? It’s the perfect healer – music and words. I have relied on songs to save me for much of my life. On any given day a song will rescue me from despair, or give wings to my joy. I feel weightless when the right song comes along. I close my eyes and fly, each note lifting me higher and higher to a place that is beyond whatever emotion I’m feeling. The song somehow takes me further into the feeling. And for that I am forever grateful. Music has always saved me.
Ever since I can remember I’ve chosen the music I listen to as a soundtrack to my life. Maybe we all do that subconsciously, but I do it very deliberately. Always have. I find a connection in the perfect pairing of words and music that transcends the limits of my own mind. I soar.
I’m not a religious person, although I was raised and schooled in Catholicism. I am, however, very spiritual and have very strong beliefs that are, no doubt, influenced by my upbringing in the church. In my opinion, religion is manmade and spirituality is innate. But that’s not to say that I do not have a connection with the tenets I was raised to believe. I’ve just chosen a different, less regimented, path – a path that is not tied to any one particular religion, or belief system.
That said, the song that touched me so deeply today happened on the day known as Good Friday. The song is “Flight” by Lifehouse, a band that is often considered a Christian band. For me, today, the words hit home in a very spiritual way.
I’ve been struggling with severe bouts of depression lately. On any given day I am nearly crippled by the waves of sadness that wash over me.
I’ve been under water/this storm has been raging/These nights are not sleeping/My dreams are now strangers to me/And I need you now/There’s too many miles on my bones/I can’t carry the weight of the world/No, not on my own.
So when I heard these words, and connected the dots, I felt like it meant something. Something big. And it does.
No matter if you’re religious, spiritual, or other this song is one you should hear. In this world today, we all have so much weight to carry, so much baggage. It’s a good reminder that, whatever your belief system, you don’t have to shoulder the burden alone. It’s too much. Reach out to the Universe, to God, to someone or something. Just don’t be alone.
Find your place to be. No more falling. No more fear. No more hurt.
We are the ones whose hearts beat on the outside. The quiet ones who don’t like conflict because it hurts too much. We already feel enough pain.
We are the ones who apologize to every animal we see dead on the side of the road. We feel pain that was never intended for us, but affects us anyway.
We feel like a raw nerve most days. Like every thing we read or see is ladened with a sadness we can hardly bear. And yet, we must.
And this is just who we are on a good day. Who we are often leads to depression and anxiety because we have no idea how to manage ourselves.
We long to shut out the world, if only for a moment, because we feel that we might implode if we see one more homeless person, one more abused animal, one more child in need.
And we help. And we care for. We go out of our way to give…for others, more often than not forgetting ourselves in the process.
So today as I was faced with a BP reading of 161/101, I was reminded of all of this. I let myself run out of my blood pressure medicine. I’ve been so busy worrying about other things in my life, other people in my life that I placed myself in the back of the line.
I talked with my mother tonight about these things – these emotions that are too heavy to carry around day after day, pretending that I’m ok. Why can’t I just forget things, or turn my head and look the other way? Why is it that every sad story finds a home in my head?
Tonight my mother answered that question. She told me that she believes I am meant to be this way. I am meant to be this way because the hurt I feel, leads me to act. I am meant to keep that ache within me as a constant reminder that I am here to help whenever and however I can. And I will. I always will.
However, I am trying very hard to practice the art of self-preservation by being selective about what I read, what shows I watch and who I spend time with. I know I’m not very good at this. But I also know that if I don’t get a handle on it then I won’t be able to help those who need it. As cliche as it is, I’ve got to help myself first so that I’ll be able to help the others who need it.
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.