“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 year Christmas will be very different in our family. For the first time in almost 19 years I don’t have to do as much sneaking around. Before your mind wanders to a wonderland that is clearly not G-rated, it has nothing to do with another man. Well, it kind of does – another man and an elf.
The magic began 18 years ago in a flurry of glitter and, well, more glitter, when we celebrated Jake’s very first Christmas. And from the very first sprinkle of those silvery star pieces, I was hooked because you can’t have magic if you don’t have glitter.
The build-up to Christmas was always epic, and, quite frankly, stressful. Did I spread enough glitter? Did I read all the stories I should have? Have I imbued my son with enough Christmas cheer to last through all the year?
It seemed that each year a new tradition was added on to the growing list. And as stressful as it all was making sure that we didn’t leave anything out, seeing the look of wonder on Jake’s face made it all worthwhile every single time.
And then his little Einstein brain started to question things. He was eight. I had a brief period of mourning, and then I got pregnant with a new believer to take his place. Just for the record, that’s not why I got pregnant, it just happened to work out that way.
Unfortunately, now my youngest, Nick, age 10, no longer believes. And since I no longer have my baby pocket, all I can do is accept the fact. So this year, Mario, the house elf, is no longer magic. Nick is fully aware that we would place him in his positions before we went to bed. However, now that he knows our trickery he says it makes more sense. There were several times that Mario failed to move during the night. Maybe because Mom had a glass or three of wine and forgot…who knows. Now Mario moves when any of us remember that he’s even around. The lack of magic and sneakery has robbed Mario of his fun. And believe me, that is a suck.
The Christmas Eve tradition of reading The Polar Express and listening for the bells is no longer the same. Yes, we will read the book. And yes, we will ring the bells, but the magic has diminished. For the past 9 years about an hour or so before time to read the story, Jake would begin to complain of a stomach ache. Oddly enough, when it came time for the family to gather and read the story building up to the finale of going to the deck to listen for the bells, Jake would excuse himself to the “restroom” downstairs, slip out back and wait for the cue – listen…can you hear the bells? And then in the quiet of the night we would hear a faraway jingle. Nick would gasp and look at me, and I would fight back tears as we both acknowledged that the magic was still there. Not once did Nick question the fact that Jake wasn’t around. We were very good at playing it off.
But this year we will read the book. And we will all walk out on the deck. And one of us will shake the bells just like every other year. Why continue with the tradition if no one believes? Well, our belief still exists, it has just shifted. And this year, since Nick’s belief has shifted, we will welcome him into the fold of those who are Keepers of the Magic.
There is so much in this world that is anything but magical. So those things that have the potential for magic, the potential to make someone smile and believe, we must continue to recognize. As I see it this is one of the single most important jobs there is. Magic slips away so easily in this world of fear and hatred. But as Keepers of the Magic we take every opportunity to remind others that magic still exists, and we go out of our way to create that magic for others.
So, Nicholas, this one’s for you. Welcome to the club!
And, just for the record, my side job is still Glitter Fairy.
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.