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.

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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.

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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

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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