One Small Step for Boy, One Giant Leap for Tourette Syndrome

I made cake all by myself and homemade icing...#proud

My son has gone back and forth about wanting to talk about his ‘ticks.’

That’s what we call his Tourette’s and OCD in our house. They are simply known as ‘my ticks, Mom’ or ‘…because of my anxiety.’

So when a writing assignment came along in school this week- very innocently, just the usual daily few sentences with a writing prompt to get them going- he froze.

He tells me some kids were writing about beating bosses on video games. Something he has done over and over again and is very proud of.

He tells me some kids were writing about no longer being afraid of spiders, or in the case of one kid, getting ‘bumped’ by a shark.

You gotta love 4th graders.

And there sat my son, debating with himself back and forth and back and forth if he should tell his teacher or his class or anyone that every single day he battles and overcomes all the zigs and zags of his brain. His brilliant, sensitive, amazing brain that causes him to (currently) do everything in ’3s’ and mutter the last word of a sentience under his breath three times or hand wash and hand wash and hand wash or hand wash.

His ticks come and go with his anxiety level and he can control them very well with all the tools from our therapist. His ticks also change constantly. Sometimes they rotate and a new tick I’ve never noticed before is suddenly very prominent while another has faded. Some fade and never return. Others seem to be on a regular rotation. Regardless, he handles them with more grace and ease than any child should have to and he has zero shame or embarrassment.

At least, he didn’t. Until he began to mature and realize not everyone does what he does. Not everyone flaps their hands and jumps up and down while playing a video game, simply because it’s exciting. Not everyone covers their ears during a school play, because the cheers are too loud. Not everyone cries while looking out the window of an airplane, simply because theĀ earth below is so beautiful.

Not everyone would take an in-class writing prompt home, so he could talk to his Mom about whether he should tell everyone he has Tourette’s.

I think they should know, but I’m not ready to really talk about it. I don’t want to give them a speech or anything. But maybe they won’t bug me so much then.

My stomach did a flip.

What do you mean ‘bug you’… has anyone said anything?

Well no, not really. But you know my friends they don’t care but some of the other kids might look at me and think I’m weird. You know Mom, I know I’m a wimp.

You are not a wimp. Why would you say that?

Well, I don’t mean that like a bad thing. I like video games and I’m not into like sports and stuff. And I’m a geeky wimp kind of kid, not like a kid that pushes other kids outside and plays those games where you punch arms and stuff.

There are LOTS of kids at your school like you buddy. LOTS. It’s great to have all kinds of friends and maybe it’s time to find some more of those kids that are like you.

But if I tell them about my ticks, they might think I’m even more weird.

Or maybe, they will better understand you and like you even more for who you are. But you can still write about anything you want honey. Anything.

…and he gets up and does this thing he does…his running from our front door to our back door. Something he just does that I’m sure is a tick, but we’re so used to it that it doesn’t register. He’s thinking. This is how he thinks. Sprints in my living room. Always having to touch the door a certain number of times. Always needing to ‘balance’ it out with exact same number of touches on the opposite wall.

Mom, I’m going to write it, but I’m not going to write a lot. My teacher might be the only one who sees it anyway, but maybe not. And maybe someone will ask me what I wrote. But I don’t want them to know too much. I will just write one thing about what I overcame and that’s it.

Pride

..and with that one thing, he took one very big step.

Surviving Yet Another Holiday With Smiles And Duct Tape

Sometimes it’s not the exact holiday you remember when your child has Tourette’s or OCD. It’s the tic or meltdown that comes with it.

After spending days deciding on his costume for this year, my son had to make sure it fit perfectly. And perfectly for him isn’t the same as perfectly for you and I. Oh no. He had to know exactly which shorts and pants felt exactly right under said costume. and how it felt zipped all the way up to the top. and now just half way zipped. And if it scratched him funny. And if it rode up on one side and not the other. And if he could run and bend his knees just right with it on, or if he had to stretch the fabric a bit when he walked. You get the idea.

Mr. Commando Dude who is too cool for his Mom

It’s trying on his helmet and mouth piece over and over, adjusting, re adjusting, and then melting down because it wasn’t curving properly over his mouth. Of course the $19.99 cheap costume wasn’t curving properly over his mouth, but try explaining that to him. After what felt like forever of going back and forth trying to fix it and him declaring Halloween ruined no less than four times, I found duct tape fixed the matter to his liking enough to make him ‘uncomfortable’ but not ‘with a tic uncomfortable’ and we considered this a win and moved on.

Frankly it's the shoes that make the costume

He then dropped off his helmet that I painstakingly worked on for hours after just a block of trick-or-treating…yup. You read that right. He wore it for maybe 30 minutes. Total. But honestly, I didn’t care. He was happy and having fun and that was all that matter. I would have taped a million cheap costume helmets to see my kids smile and be excited like that again.

After adjusting his sister’s cheap headband a few times I was thankful she was happy with how it looked and off they went. She didn’t want make up. She didn’t even want her hair brushed. She threw on her ninja outfit and was ready to rock.

And here is our ninja girl angry she couldn't bring her ninja knives to school

Of course there was also the shoe situation…his were uncomfy after breaking a few days before and his Dad, thankfully, fixed them ‘PERFECTLY’ – she just threw on her pink crocs and took off running. In fact, they both took off running this year so fast I was thankful to have been handing out candy at home.

But now that I think about it…one more thing about that ‘shoe’ situation….why did my son make such an ISSUE over me fixing his helmet and didn’t even blink at his Dad fixing his shoes? The tools which help him run! I swear he just trusts the way his Dad fixes things more than the way I fix them because the man has tools. Whatever. I bet you some of those tools are mine.

While I am glad another holiday is in the books for my kids filled with memories and fun..I’m also glad we continue to find ways to accommodate and beat his Tourette’s and OCD, and not let it beat us. Sure, we all get a bit aggravated sometimes, but we NEVER say it’s his fault and we NEVER make him feel as though there is anything wrong with his body’s needs and his discomforts, doing what we can to make him comfortable in a world he would love to organize and make feel unscratchy and comfy.

But then again, given the chance…wouldn’t we all??

Camp WhoseACrazyMamma

My babies

I felt sick sending my kids to camp today. That pit of the stomach sick, gnawing and ripping at my heart as I wondered if this was the right time to give my children new challenges.

My children are used to a certain level of sheltering. A protection that can’t last forever, nor will it hold at all times for all things. With my sensitive son and his Tourette’s and OCD, and my daughter’s strength and wit and silliness, enrolling them in a non-traditional school was a no-brainer. My quirky family fits in well and our little oddities are welcomed with open arms.

Toss in my illness, and never-ending doctor’s visits, hospital stays, and treatments which cause stress on them both, and their social interaction ends up more limited than I would like. But it’s hard to host playdates when I’m hooked to an iv and I hate relying too much on the kindness of other parents as they offer to shuttle my kids back and forth from their homes and nearby parks.

All of this adds to the social awkwardness that gives our family an extra dose of that quirk we’ve carved into our community where we have no need to acknowledge or hide.

And then came summer camp. A wonderful opportunity presented to us with swimming and archery and drama and crafts and everything you’d expect, except it is outside of our hometown and very traditional. Things I never really gave a thought to when excitedly signing them up, until my son came home after his first day relaying a story to me about how he was called names and made fun of.

My heart sank, my gut hurt, and I realized I had not prepared them for ‘traditional’ camps or schools. For what passes these days as ‘normal’ out there in the world. We had so carefully carved out a community that fits us, fits them, that I feel I have failed in showing them the ‘other’ side of things and trotted them off to camp where we’re the only minivan in the valet line and very probably one of the only families attending a casual, progressive, and accommodating non-traditional school.

I felt like I threw them to the wolves.

Of course my son was steadfast and strong and brave. He had stood up for himself to the boys, and he had told his counselor. He even made other friends within his group so as to avoid the kids who immediately labeled him as different. But he was also hesitant to return. After talking to me he felt better about giving it another try, and left this morning happy and somewhat excited to attend.

My husband had a talk with his counselor, and we have no doubt the camp will keep an eye out, but the bigger issue was my failure as a parent to see this coming. I should have known better. I should have realized I couldn’t just plunk my kids into that atmosphere and expect them to conform and blend.

I’m proud that my kids are unique. That they are quirky and odd and brilliant and creative with hearts of gold. And I know I can’t shelter them forever from cruel comments and bullies and jerks and all the things that go bump in the night.

There was a large part of me that wanted to immediately yank my kids from camp and keep them with me all summer, and a small part that knew sending them back this morning was the right thing. Letting them learn, supervised, that sometimes people are assholes but those assholes shouldn’t ruin your good time. I would never let it get to the point where my child was sick over attending or anything more than typical kids being kids…but that didn’t make hearing what went on any easier. And this was just very tame kid social circle stuff.

I am, however, thankful my son knew enough to handle his own issues at camp and then talk with me about it all. He wasn’t afraid to confide in me, talk to his counselor, or go back and have fun. Clearly he’s taking it all much better than his mother.

And of course it didn’t stop me from telling him I would stand at the ready to string-up anyone who dared mess with my kids. My plan is to let meanies dangle from the camp flagpole by their underwear, which elicited many giggles and astonished looks from my children, shocked Mom would say (or do) such a thing.

But then we talked about how that would make ME the bully, and tactics they can use to fend off any kids at camp who seem to want to cause trouble.

There are so many things we want for our children. We all want them to get a good education, learn right from wrong, become good people, etc. etc. etc. But there is so much more we don’t want for them. I don’t want them to feel heart-break, or to be picked on. I don’t want them to dread school or a certain clique of classmates, or even new experiences like summer camp in another town. But all of those things means never falling in love, never finding new friends, and never venturing outside our comfort zones.

Which is why I dutifully packed up lunches and swimsuits and towels and sunscreen this morning and sent the kids off to camp. Everything in me wanted to just forget it, and keep them home. Because it was safer. Because it was easier. Because we have all just had enough lately. But I sucked it up, hid my tears, and watched them go.

They deserve to have fun, they deserve to find new friends, and they deserve a normal childhood with all its trappings and rewards.

And I can only hope I won’t fail them again.

He Meets His Idol

JackAndIdols

…and there you have it. My son and the final four contestants of American Idol. They were super sweet him, and made him feel very special.

James Durbin and Jack talked about their Tourette’s.. their tics. Wide-eyed Jack listened as James told him how some of his tics got him into a lot of trouble as a kid, with people thinking he was being rude.

Me too! I do this one with my tongue (makes raspberry noise) and sometimes people think I’m being mean

But you can’t help it

Right! I can’t help it. It’s itchy.

Yeah man, that’s a hard one. I have ones with my lips too.

I saw that! I saw that on tv. And you know, I never saw anybody do that like me.

Cool man, it’s cool.

Jack meets his idol

Lauren teared up as Jack told James his story and slathered him with love and hugs and kisses. Scotty told him he was the man and high fived him. And they all fawned over him like he was the rock star.

As we left I took the time to thank James, and told him, as a Mom, how much it meant for my son to see someone like him on tv-and kicking butt. We hugged. Lauren then tried to kiss Jack (yet again) and I confided in her that he’s just recently ‘discovered’ girls which she took as an invite to taunt him further. Jack pretended to resist as she threatened to lay one right on his lips

‘Awwww man, girls. Geeeeeeez.’ he squealed as Lauren moved in to kiss him.

Mom, she’s pretty. I guess it’s ok if she kisses me. And James really did rock.

Thanks American Idol and a certain special employee who helped my son’s dream come true.

American Idol Here We Come

What Jackson did while Hala rode

Clap
Clap clap
Clap

The pattern repeats over and over again in my living room, as my son plays his video game. Sometimes it’s a clap, sometimes it’s patting his legs in a pattern, sometimes it’s sucking in air, sometimes it’s using his tongue to make a raspberry noise with his lips, sometimes it’s sucking his shirt or blinking or flicking his fingers in yet another pattern.

My son suffers from a mild form of Tourette Syndrome and OCD.

If you didn’t know, you might not notice. However if you spend time with him, you might catch a glimpse.

We’ve always treated it as no big deal in our house, so when casually flipping through tv channels months ago it never occurred to me just how aware my kiddo was of his unique condition.

On a whim I turned on the audition portion of American Idol while my then seven-year-old played Legos on the carpet…half paying attention to the singing on the television.

Then came James Durbin.

Mom! Mom! Did you see that? Did you see that guy? Mom…he has tics. He has a tic like me. Mom…he’s like me!

My son had never seen another person like him. He had never experienced anyone ‘like him’ in school, around town, and certainly not on tv. His eyes were as wide as saucers and he flapped his arms and jumped up and down, as he tends to do when really excited.

Mom, he has a tic and he’s awesome!

With gusto he’s been following James. Rooting for the guy ‘like him’ who ‘rocks.’

I’ve been holding my breath each week, hoping James makes it through to yet another round. Knowing full well my son will crumble with emotion and tears if and when James is voted off. Sensitive. He’s very sensitive. It comes with the territory of these disorders. He loves big and hard and with all he’s got and gets attached very easily.

So you can imagine how excited he is for Wednesday’s show.

Why? Because my little guy and I will be in the audience, and he gets to see his hero in person. The guy like him who rocks. The guy that opened his young eyes to the bigger world of Tourettes and Aspergers and OCD and Autism and all the other disorders that make so many millions of children ‘different.’

My husband and I have talked many times about if and when I should ever blog about this. We always worried that our son would be labeled forever if I said too much. Revealed too much in a world that likes to look down on anyone ‘different.’

But seeing James on American Idol, and my son’s reaction to him, has taught me a lesson too…’different’ isn’t something to hide. Ever. And it’s given my son the courage to talk about his tics, with pride.

So maybe you will see us cheering our hearts out in the audience on Wednesday on your tv. Cheering for the guy that showed my son there is nothing weird or uncool about tics. Showing him that ‘different’ is awesome…and at times, totally rocks.

Good Luck James.

All He Needs Is A Cape

Last night I told my son he was my hero.

My boys

We cuddled in his bed after a long day, and very quietly he asked me a question that stopped my heart.

Mom, why am I different from the other kids at school?

We talked about how amazing he is, and how smart and wonderful. We talked about how well he is doing in school, and his many, many friends.

We talked about how everyone says he’s brilliant, and bright… and how well he handles himself. How he’s a leader, and so very sensitive and caring.

And then I told him he was my hero, and he smiled like I have never seen him smile before.

This morning as we walked into school he stopped on the stairs before entering his classroom. He grabbed my shirt, which happens to say ‘I love Jack,’ and grinned that huge grin again.

It’s great being different, because I get you.

Can you take me all the way into class? I want everyone to see your shirt. Because I’m a hero.

Worries

We weren’t in just any waiting room this time. Not another blood draw for Mom or CT scan or a look at my insides. In fact, those appointments are easy these days.

But this wasn’t going to be easy.

In fact, after four hospital stays in four months, and a third surgery coming up in a few weeks…this was the hardest appointment to keep.

This time we needed to address the emotional state of our house. And put it in order.

photo.JPG

I took the kids to a specialist yesterday. She’s a wiz in tics and anxiety and she’s been long overdue in our family.

It was hard to hear certain words from her- like Tourette and OCD. It was hard to hear certain words from the kids-like death and orphanage. But it was much needed.

We are getting answers. We are getting reassurance. We are getting tools we can use. We are ahead of the game, we are on top of it and we are plowing through all this with knowledge in hand.

We are also beaming with pride at our brave children, their brilliant and different minds, and the comfort we can give them.