My Kid Has A Tic And He Thinks it Makes Me Mad

28 comments

Instatus 21-01-2014 23_20

I looked back at Isaiah from the front seat because a movement caught my eye.

“What ya doing, Izze?”

“It’s just my tic mom.”

“What’s your tic telling you to do?”

“It’s telling me to lock and unlock.”

We’re at a stoplight so I look behind me and sure enough his hands are making a locking and unlocking motion like he’s holding a key.

“Mommy, are you mad at me because of my tic?”

“What?! No!!! I love your tic!”

“What? You do? Why?”

“Because your tics are so cool! They do the coolest things and make you totally special and unique and I love it!”

My Kid Has A Tic

Isaiah’s tic started when he was 4 1/2 which is pretty early for tics to start. Even though they are fairly common in boys, they tend to start at 6.

I couldn’t get any good answers from his pediatrician. So I switched pediatricians to one who would listen, who also was concerned that they started so young and who helped get me get in to see a top neurologist. You are your child’s only advocate – never forget that.

Isaiah’s tics were also not common tics like face twitches or even eye rolling. Isaiah had what they called “large movement tics.” His whole body was involved, and the answers I got from the internet scared the heck out of me. So let this be a lesson to you, when you are scared about something going on with your kid NEVER GOOGLE IT! My Dr. told me, I didn’t listen. I wish I had.

4 years later, Isaiah still has a tic. The Neurologist says he’s cool. He has no other worrying symptoms.

He did tell me something interesting. They know very little about Tic Disorders. What they do know is they involve the Basel Ganglia, a part of the brain that is still quite a mystery and also involved in Sensory Processing Disorder, Spectrum Disorders and ADHD. He had Isaiah see a whole panel of specialists who deemed him “normal” minus the Sensory Processing Disorder, however this, our favorite Dr, doesn’t worry about Sensory Processing Disorder. It doesn’t keep Isaiah from living a normal life, and that is his main concern.

Isaiah does funny things like quietly repeating things he hears on TV. He moves his hands in front and behind himself like the tequila dance from Pee Wee Herman’s Big Adventure, and his current incarnation is that he rubs his hands over his face, even more when he is nervous or excited. It also gets worse when he’s in front of a screen for a long time.

The thing about tics is; they can and do change. One day he can be rubbing his hands down his face 5 times in a row, another day he can be looking behind himself a few times every 5 minutes. There were days recently when he actually turned all the way around, it kind of sucked because he kept losing at his video game.

Today I asked him what his tic felt like, he said, “It feels like the buggies inside my body are sending troops to destroy the evil Tic Monster. But they can’t do it, he’s just too strong for them. When the evil Tic Monster plays his evil piano, I have no choice but to destroy him.”

Well, there you have it. The Evil Tic Monster’s got nothing on him!

isaiah tipping his hat

28 comments on “My Kid Has A Tic And He Thinks it Makes Me Mad”

  1. He is so adorable! I hope that someday there will be more answers regarding neurological and psychological mysteries. My son doesn’t have a tic, per se, but he has this “thing” where he’ll just go and knock things over or off of the shelf and he says he has no idea why he does it. It’s just an impulse. The woman doing his eval from the school system (we had one done because we believe he has a sensory processing disorder, as well) was stumped. Anyway, really hope Isaiah is able to defeat that evil Tic Monster someday!

    1. Thanks Jessica, I hope you get answers too. I guess I’m okay as long as things don’t change. I mean his tic changes, but you know, as long as we don’t start adding to the laundry list!

  2. I always sit up a little straighter when you write about a parent being their child’s biggest advocate. I know it and I like the reminder. I know next to nothing about SPD and tics and you are expanding my world by writing about your amazing kid. Awesome, Jen.

    1. You know Jean, it was a lesson I was forced to learn when Isaiah was too young and a ped. sent me home with a 9 month old covered in hives, and said it was bothering me more than it was bothering him. I held him in my arms for the rest of the day as he slept and I cried. That was when I realized that the doctors/therapists work for me, not the other way around. And if something they said was unacceptable, then I needed to move along.

  3. You are definitely your child’s best advocate! Many parents don’t understand what a tic is and that it can’t be helped. It sounds like you understand and advocate for your child. I have an eye tic which worsens as I get more stressed or if I’m exhausted. My husband tells me it’s cute but I hate it! However, it’s a part of me so that’s just the way it is.

    1. It’s so tough Hezzi, I wish I could always make him feel comfortable. But there are days when he just wants to be “normal” he says. It’s my job to get him to understand there is no such thing as normal.

  4. I sometimes wonder if Tucker has a tic already but he’s so young (4) and they vary so much (like a lot) so I always assume it’s a stim. Still, as he ages, I think ASD is less on the table and that maybe SPD and OCD and ADHD and and and is more…
    I love how you told Isaiah that his tic was lovable and unique. That means that you rock forever and ever and ever and ever. For reals.

  5. That’s fascinating. I love how you’re his champion! Everyone deserves a mom like you. What a cutie patootie, too! Are the tics a form of OCD? Or something completely separate?

  6. This: “You are your child’s only advocate – never forget that.”
    If every parent could embrace those words we’d live in a much different world.

    He’s gorgeous.

    Well done on the post. It’s a gift.

  7. I love his description… an evil tic monster playing a piano! Awesome! It is great that you’ve helped him feel so comfortable about understanding it so he doesn’t have to feel scared or ashamed of it.

    1. Thanks Angel, me too! That’s part of what makes him so special, and why I continue to homeschool him. His own unique perspective is probably so much more healthy than one a school social worker would give him!

  8. He’s adorable! Have you ever read David Sedaris? He had tics as a child — how he and his family dealt with them (and how they didn’t) make for some very funny, very human stories.

  9. Hi Jen,
    I just found your site today. My now 7 y/o son has a tic as well as several other relatively minor things. The tic is what scares me the most. I want to be an advocate for him, but I don’t know where to start most of the time. There are so many directions I could take, and I can’t do everything at once. Thank you for writing about this. It helps to know I’m not alone in having a child with a tic and some form of neurological impairment and to put things in perspective.

    1. Wow Kim! Thank you! I am so glad you found me. I really felt/feel alone too. They say it’s common but I’ve met kids who blink a lot, or their eye twitches, what my son does is way beyond that. So I decided to write and research. Please feel free to contact me about ANYTHING!

  10. Have you looked into PANDAS/PANS? My son had tics, too. Still does sometimes, but since it’s caused by inflammation of the basal ganglia we are able to control it with supplements that support and protect his brain and antibiotics when needed.

    1. Thanks Kimberly, luckily we have an awesome doctor and it was actually the first thing they tested him for. I am definitely okay with the not knowing, as long as what I do know is it’s harmless πŸ™‚

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