ADHD – Another Day Having Discussions

I used to read that the “co-morbid” conditions of T.S. were far more frustrating than the tics themselves.

11

As defined, co-morbid means the annoying other conditions that make you want to poke your eyes out with ice picks the simultaneous presence of two chronic diseases or conditions in a patient. For kids with Tourettes, this could be ADHD, OCD, Autism, ADD and insane awesomeness.

Stink deals with the last two on the list, and let me tell you, it’s been a crazy year. If I was able to guide him through the chaos, drama and joy that accompanies kinder through sixth grade, let’s just say that seventh grade has proven to be the final leak in a boat that was destined to sink without a major overhaul in the floorboard.

Having a kid with T.S. and ADD, while being a working parent with a little bit of ADHD herself (I know… biiiig shock) is kind of like fixing a boat’s floor while still on the water. It can be done, but the progress is slow (Not to mention tiring. How many buckets of water can you scoop and throw over the side while steering the ship and feeding the crew?)

The best bet to fixing that leak is to get that boat out of the ocean all together. Take a break from the swells and breathe while on dry docks. Get a professional boat repair man. Invest in his advice, buy the supplies to keep it fresh and clean once it’s back on the water, and absolutely join a hole-in-the-boat support group. After all, there’s a decent chance that at some point that hole in the boat will come back. You’ll want another mama to cruise by in her motorboat when this happens.  You’ll want that lifeline and the invitation to a cup of coffee in her well stocked cabin to catch your breath until your own boat works again.

Since life is not apparently perfect, I’m kind of stuck in the middle between shore and open water. I’ve been organizing my own life, to help organize Stink’s, and we’ve made progress. I am avoiding a lot of frustration by accepting life on life’s terms. I am not focusing on what he’s behind on in school. (Um, everything.) Instead, I’m focusing on helping him get caught up with the goal that he’ll be doing this himself at some point.

This means coming home each day after school and doing his work in the same spot. It means having him diligently utilize his planner so that he’s not relying on his own brain to remember every little detail of his “overwhelming” (his words) seventh grade schedule.

1

The challenge with using a planner is that you have to remember to take your planner home. And then, here’s the real rub: you have to find it in the first place. And when that task seems too monumental, you just throw yourself on the floor and scream like a Carolina fan reach out to an educator who knows you’re doing your doing your best to help your kid.

Here’s an email exchange I had yesterday with one of his educators, minus the teacher’s name because, you know, these teachers have nothing better to do than stalk their ADD student’s mom’s blog.

Hi Teacher Fabulous-

The last piece of my kid’s organization puzzle is his missing planner. He is out sick today so when he’s back tomorrow I will have him check his locker. If it’s not there, is there an extra he can have? If not, I will buy one and he will be held accountable.
If there is any homework you need him to do today, please feel free to let me know. 
Thanks!
Andrea

 **
  
Hi Andrea,
I don’t have any extra planners.  I gave my last one away a few weeks ago.
We are practicing percents in a new packet today.  Do you want to pick it up later?  Let me know.
Thanks,
Teacher Fabulous
** 
 
Hi again –  
 
Yes, I will pick it up today after school if that works for you? If not, you can leave it in the office. Whatever is best. 

Can I just pick up a planner at an educational store?
THIS KID. He better get with the program or I’m returning him. I have books to write.
Andrea
**
Andrea – 
I have to supervise out front after school.  I’ll do my best to remember to bring it out there with me so you can get it then.  

I would make your own life easy and just go to Target or Walmart for a planner.  
There’s a thirty day return policy…..sorry, you can’t return him!  :)
Teacher Fabulous
*** 
 
Oh for f***s sake. 

Until next time, May God grant you the serenity to accept the tics you cannot change, the courage to change the tics you can, and the wisdom to know the difference.

My book is available on Amazon. Follow me on Twitter@AndreaFrazerWrites or on FB

Happily Ticked off

New Pediatrics Tourette Syndrome Research Opportunities at Overlook Medical Center

best_f7c13c1e8fb2ac083d12_OMC_Logo_2013

Study 4: Randomized, Double-Blind, Placebo-Controlled Study to Assess the Safety and Efficacy of NBI-98854 in Pediatric Subjects with Tourette Syndrome

Ages: 6-17

Investigator: Roger Kurlan, MD, Overlook Medical Center, Summit, NJ

Contact: Caroline Sabatino, 908-522-5901

For more information, please visit the following link: http://www.prnewswire.com/news-releases/neurocrine-announces-initiation-of-phase-ii-clinical-study-of-vmat2-inhibitor-valbenazine-in-children-and-adolescents-with-tourette-syndrome-300213365.html

Overlook Medical Center has additional Tourette Syndrome studies available

Study 1: Multimodal Dietary Treatment in Tourette’s Syndrome

Ages: 12-17

Investigator: Roger Kurlan, MD, Overlook Medical Center, Summit, NJ

Contact: Caroline Sabatino, 908-522-5901

Patients with TS age 12-17 are eligible to participate. We are testing a group of dietary supplements that act to increase inhibitory chemical signals in the brain, detoxify environmental toxins, strengthen the body’s metabolism, and support brain nerve cell membranes. Subjects will also follow a Whole Food diet. The study lasts for 8 weeks and involves 3 visits to our office.

Study 2: A Randomized, Double-Blind, Placebo-Controlled Study to Assess the Safety and Efficacy of NBI-98854 in Adult Subjects with Tourette Syndrome

Ages: 18-64

Investigator: Roger Kurlan, MD, Overlook Medical Center, Summit, NJ

Contact: Caroline Sabatino, 908-522-5901

For more information, please visit the following link: https://clinicaltrials.gov/ct2/show/NCT02581865

Study 3: Ecopipam Treatment of Tourette’s Syndrome in Subjects 7-17 Years

Ages: 7-17

Investigator: Roger Kurlan, MD, Overlook Medical Center, Summit, NJ

Contact: Caroline Sabatino, 908-522-5901

For more information, please visit the following link: https://clinicaltrials.gov/ct2/show/NCT02102698?term=Ecopipam+treatment+of+Tourette%E2%80%99s+Syndrome+in+Subjects+7-17+Years&rank=1

 

Mothers Tell Stories…

here-comes-the-domAnd so here’s mine. It seems as if the moment my kid hit 13 the teens hit full force. The defiance, the arguing, the overall surliness.

And, well, if I’m being honest, I thought it was going to be one of those deals where my kid, while still totally socially appropriate, would still find me amazing and cool and, despite being busy with friends and outings and Boy Scouts, would want to jump in the car the moment I say, “Hey, who wants to the grocery store and crash the free sample table!”

Every single little dream there? Lost. We’re not talking by a little. We’re talking epic defeat. For one thing, my kid is far from winning any social awards at school. Oh, he has a bunch of friends, but they’re kind of like him… a bit on the wacky side… a little bit clueless on the when girls like them side. (Yes, Stink, if she remembered to call you on your birthday, buy you a gift, buy you a Christmas gift and ask you to teen night, there just might be some interest.) Boy Scouts He doesn’t do uniforms.

Stink and his friends are like oversized male children with skinny legs, crazy fros and a scent that can only be described as a cross between testosterone and Axe.

The difference between him and his other friends, however, is that I can’t make out their duck quacks from across a crowded parking lot. When they roll their eyes, I know it’s because they are being sassy and not because Mr. Flappy Lid has made his appearance again. When his buddies nod, it’s to mean “yes” or “no”, and not the head jerk prodigal son making his triumphant return. (No, I’m not having a banquet for these returning relatives. But if I did, you could bet it would be gluten and dairy free.)

Stink’s tics – the loud ones – are back. And this time, they are stronger than before. (Gosh darnit, Taurine, you let me down again. You’re like that bad boyfriend. Just when I think I can trust you, you leave my sorry butt in a heap of despair!)

Here’s the thing, though: my kid, like his eyes, just roll. He doesn’t see them as a problem. They don’t make him different or geeky or less than. It’s simply something he does, not who he is.

In my brain, this should be enough. But in my heart, I still die a little bit. As a mother of a kid with this wonky disability, I fight so many demons:

  • Do I not love him enough for who he is – including his noises?
  • Do I not love him enough because I’m not making him take meds?
  • If I am not choosing to not put him on medication, then am I ruining his life with my occasional “Keep it down, kid. PLEASE!” (Oh yeah, Saturday’s “G-DAMNIT, STINK, QUIET DOWN FOR ONE SECOND!” was epic. He literally curled into the door frame of the car and didn’t talk to me for ten minutes. He also didn’t tic. And that made it worse. I won! For being a butt wipe! Hooray for me! Send the Mommy Shaming Award my way, FedEx!)
  • And what about his sister? I have spent soooo much extra time with her the past few years – I’ve wanted to… it’s not a challenge – but it’s a balancing act to say the least.

I had a good cry last night. I mean, a good one.

Me: Stink, I’m so sorry. I just suck sometimes. I feel so bad for yelling at you about that noise.

Stink: Mom, it’s okay. (Quack quack) I forgave you already! I don’t keep resentments!

Me: I know, but I feel awful. I just love you so much. I don’t want to ruin you.

Stink: Impossible!

Me: Well, thank you. And hey – I promise – I am not going to ask you to stop ticking again.

Stink: Also impossible! (He’s right. Now I’m really sobbing.) It’s okay to cry, Mom. You got to let it out. (He farts.) Ahhh… it just feels better to release, you know?

I swear, the noises from that kid never stops. But his biggest ticker is his heart. I’m grateful.

And so, once again, I am saying it here: I am determined to not get so wound up on tics. But I can’t do it on my own. I just can’t.

Dear God, get in the car and hang with me. Don’t drive like that Jesus Take the Wheel Song. That would creepy to see a long haired dude in a tunic driving my stinky SUV. But be with me. I need the support. Andrea. PS: I hope you can handle Cheeto crumbs and Country Music. 

Yup, when I give it to God, there’s just so much more perspective.

This morning, after a little praying, it dawned on me that I might not ever accept this disorder. I can, however, accept that it’s sometimes just hard. The reality of what is, not what I want it to be, was not always my first choice toward serenity, but it sure as hell makes for a more a more peaceful reality. I can do something with reality. I can fill bad days with joy. I can walk away from yelling at my kid and stroll in the sunshine instead. I can write. I can pray. I can help another mom who is suffering. (Write me, moms! HappilyTickedOff@Gmail.com).

When God’s at the center of my problem, not my misery, I can relax. I can remember that it’s not my job to make my son disability-free. It’s my job to love him. And boy, do I.

Final Thoughts

Tonight I took a break. It had been a long day of working and cooking and kid pick-upping and homeworking. Instead of sitting at home counting tics doing more Ebay listings, I went with my daughter to a YMCA banquet. She was one of 3 asked to perform for a fund raising event.

Playing Wendy in an upcoming Peter Pan show, she put on her yellow Mary Janes with white ankle socks. She stood straight, hair in bun, and spoke in a sweet British accent, “She’s the person who kisses you goodnight…” and then she sang… “your mother and mine… your mother and mine.”

She went on to sing, “Mothers tell stories… they often do… what you can’t do… mothers can do.”

Raising my kid with Tourettes isn’t unlike my daughter getting up on stage, singing in front of hundreds. I get to hide my fear with my poker face. I get to get dressed every morning (the bun is optional) and I get to sing my heart out because the lights shining on me. And maybe, at the end of the day, my son will remember his mother who loved him enough to write a book, to pen a blog, and hopefully help a few others out there not feel so alone.

“Mothers tell stories, they often do, what you can’t do, mothers can do.”

Moms, you can do it. You can. And worse case, if your day is hard, consider climbing into bed with your family – tics and all. You’ve got one childhood to tell a good story. (Pssst: You are an amazing hero in this story. Give it a good ending!)

my-familyThis post dedicated to Denise, who always seems to show up when I need it most. I am grateful. 

Until next time, May God grant you the serenity to accept the tics you cannot change, the courage to change the tics you can, and the wisdom to know the difference.

My book is available on Amazon. Follow me on Twitter@AndreaFrazerWrites or on FB

Why Your Child with Tourettes Will Be Set for Success

Set-for-Success

Last year, while I was pregnant, I wrote about some of the thoughts that ran through my head, particularly about the possibility of genetically passing my Tourettes down to my baby. Apparently, I’m not the only one. I’ve had multiple parents write in to me, concerned about giving their children their disorder.

We know the pain that comes when someone tells you to, “stop that,” because they find our tics annoying. We hate the idea of our children being harassed by playmates, school peers, even coworkers one day because we know we won’t always be there to stick up for them.

I recently received a comment on my post, “6 Ways to Support Your Friend with Tourettes,” from a gentleman, stating his father used to hit him when he ticced because he thought it was on purpose. I know someone personally whose grandmother slapped him when he would tic for the same reason. Books like, “Front of the Class” by Brad Cohen, and “World’s Strongest Librarian,” by Josh Hanagarne record struggles that the authors go through even as adults that involve being thrown out of theaters and restaurants, and struggling to find a job with an employer who can see (or hear) past the tics.

As I type this, I’m watching Jelly Bean sleeping through the monitor. She turned 10 months old this week, and that kid already has my entire being wrapped around her little pinky. Her smile, her slobbery kisses, the sparkle in her eyes, the way she looks at me when I walk into the room makes me want to sob with joy, as well as fear. Like so many other parents with tics, I ask,

“If she inherits my tics, how do I watch her face the cruelty this world heaps onto those who are different?”

You will know that your child is already one step ahead of where you were because your child will have a parent who:

  • will better know how to recognize tics if they appear
  • will better know to bring her to her pediatrician to see if she needs a diagnosis
  • can go to bat for him if he needs extra time at school, by requesting a 504 or educating his school staff about Tourettes (because believe me, not many people know)
  • can share your tricks with him when he struggles to manage his tics in church, or to leave if they become overwhelming
  • can understand and empathize when the tics strike, instead of embarrassing him for it or telling him to quit
  • can help her siblings understand that she needs their support, not their jokes
  • can teach him to self-advocate in situations where his disorder is misunderstood
  • can teach him to educate others about his own condition
  • can help him do his best to find employment where he can soar beyond people’s expectations
  • can build her up so she’s less afraid to tell a significant other about her disorder
  • can help him see that the world is still his…he’ll just have to come at it from a different angle than some other people

We want so desperately to promise our babies that they won’t struggle the way we did. But we can’t. What we can promise is to be their cheerleaders when they stumble, their voices when they can’t speak up for themselves. We can listen when they need to talk, and hug if they need to be held. We can let them know they’re not alone. We can help them learn management techniques that we’ve picked up over the years, and help them develop healthy habits like maintaining healthy diets and regularly exercising. We can make a list of tics and habits for the pediatrician so he knows which direction he should be looking in. We can show our children they deserve to be loved and respected like everyone else. We can love them, not in spite of their tics, but for who they are as whole, complete, real people. We can pray for them until our knees go numb.

Tourettes may have been Hell for your when you were young, but that doesn’t mean it has to be that way for your child. My parents made a world of difference in helping me see myself with the same kind of worth I saw in other people without Tourettes. You can do the same for your children, making their lives better than yours was because you, their parents, care. And that is exactly what our children need.

Tip #3 to Reduce Tics: Limit Artificial Flavors

rainbow-of-risksGreetings from TicVille:

Yes, despite my big hopes that Taurine was the magic elixir that was going to eliminate all tics, twitches and noise, they are back. Turns out… crazy as this is going to sound…. that MY KID HAS TOURETTE SYNDROME. Apparently there is not a one-size-fits-all cure.

That said, the tics are not as bad as they have been in the past, leading me to believe that the Taurine and Magnesium protocol is helping. As soon as money permits we’ll go back to our favorite  nutritionist to get the rest of the testing done.

  • Does he he need to go on GAPS due to a leaky gut?
  • Does he need to eliminate dairy?
  • Does he need detox from some heavy metals left over from his vaccinations years ago?

Perhaps all of it. The old Andrea would want to do that now! Now! Now! The new Andrea… the one who is trying to pause before freaking out… is going to take it one day at a time. That seems to make life more tolerable – not just for me, but for everyone in my family.

Here’s the deal, folk. My kid is already 13. I can spend the rest of his remaining childhood freaking out over this crazy syndrome – about everything I could or could not be doing – or I can attempt to do the best I can and just love the hell out of him. I’m choosing the second.

In the meantime, I’ll continue to keep him as healthy as possible which leads to Tip #3 on my tic reduction list: Limiting Food Dye.

Below are a few excerpts from this post that talks talks about why it’s been banned in Europe.

“In 2008, a ruling was passed banning the use of the specific food colors in the UK [7]. This followed allegations that the artificial food colors used have promoted health problems in children [8]. Consequently, the UK Food Standards Agency has called for the ban on the use of six foods coloring in the preparation of ingestible products such as foods and drinks since they have been associated with promoting hyperactivity in children .”

And then there’s this:

“In the United States, there have been legal battles over the use of synthetic banned food dyes by Kraft Foods Group Inc. by two mothers. The two women wanted Kraft to adopt safer natural food coloring in the making of food products as practiced in many other countries such as the UK but declined to adopt the use of the natural food dyes.”

Does it Really Make a Difference?

This post talks about how the verdict is still out on food dye. It says that some kids aren’t affected by it at all, while others are highly allergic. My kid is probably somewhere in between. My goal is to keep him eating as clean as possible and then just hope for the best.

2016 – Making Good Choices for Mama!

I don’t 100% know if food dye makes a difference, but I know what does: taking care of me. That’s the goal this year. Why? Because if I don’t, who will?

As I head into 2016, I’m once again looking at my different work options. My husband is in Year 3 of his own business, and while it’s doing okay, we need the income. Ideally I’d do something that really uses my skills, like writing musicals about Tourettes and going on tour as the spokesperson for Yuban! But until that ideal job comes along, I have my freelance writing clients and my Ebay biz. I will take a steady approach to applying and not get crazy… like this morning… when after ONE HOUR of applying for an online job I was booted off the system. Oh, yeah, that was fun. I’m  not 100% sure what “taking it easy” with this job hunt will mean, but I do know this: God has a plan.

Being a Ball of Nerves Doesn’t Work – Who Knew?

It seems to me that when I get into self-will I get myself into a load of trouble. I’ve decided this year that rather than go nuts trying to make something happen come hell or high water (which involves lots of arguing, stress and occasionally screaming at my kids that “Your room looks like a Salvation Army with a bad case of the runs!” which… well… does not a peaceful bedtime make) I’ll just do a little bit each day.

And then I’ll rest.

Like today, when I stopped for an hour to have a cup of coffee with Marta, the 67 year old neighbor, who put in her teeth for the occasion and told me all about her son in Mexico who runs his own I.T. business and is sending his ma-mah on a $3000 tour of her home country in the Spring.

Do I want the tics to go away? Yes. But more important than that, I want to be sure I don’t miss out on the joy of my son’s beautiful laugh.

Do I want to make more money so my kids don’t have teeth resembling Tom Sawyer’s garden gate? Absolutely. But until that happens, there’s a Costco run in a few weeks with my adopted Jewish Bubba, Ginnie.

Do I want my kids to clean their room? Yes. But until they get their own space (which they’ll have in a few weeks thanks to a big rearrange) I’m just going to let the room go. Why? Because in the big scheme of life, it’s not important. But other things are.

gegegThere’s cake to be baked with my daughter.

efefe

There’s a warm fire to be had this evening where my son, tics and all, will read a chapter to me of The Hunger Games. (I’ll take it before he realizes just how uncool his mother really is.) There will, of course, be food! (Everything is better with Mexican food. Thank you, Fred – the kid’s janitor at public school – who makes a tamale like nobody’s business.)

aaaa

And there’s this blog to write.

In the hustle and bustle of making a buck, I’ve missed my personal writing. It’s what makes my soul happy. If you’ll check in, I’ll write.

Until next time, May God grant you the serenity to accept the tics you cannot change, the courage to change the tics you can, and the wisdom to know the difference.

My book is available on Amazon. Follow me on Twitter@AndreaFrazerWrites or on FB

Happily Ticked off