Sunday after church we took the kids ice skating. For those of you who live in beautiful wintry wonderlands, picture a frozen pond surrounded by snow capped trees and cardinals.
For those living in the city, like us, picture a mall with busy traffic on one side and a parking lot on the other. Picture kids in shorts and parents in tank tops. It wasn’t Norman Rockwell holidays In Dreamland, but we had a blast.
With Stink’s tics in high gear these days (lots of head shakes forward and back, side to side and strained speaking that sounds a bit screechy) I was only too happy to get on the ice and go round and round – getting that pent up “Ooooh, I wish it would stop” energy out.
Lord knows my head had been going in circles as well. “Oh, no, does he need to be put on medication finally? Should we not have taken him off the focus pills? Is it too much gluten? Do we need to go back to the supplements again? Acupuncture? Me going back to work?”
While all of these concerns are valid, I can’t let them define my life or his. The reason? His tics don’t bug him. They only bug me. Which, again, and I fully admit this, makes me a narcissist. BooIt’s why I’m bringing this up now – and I really want your opinion, as it relates to my book. (Yup, more about me. Narcissist!) Continue reading →
She wrote the following comment on my “About” page at Happily Ticked Off. In case you only check this blog, I thought it was worth cutting and pasting as a post below. I will contact her, per her generous offer, and have her husband do a guest post on Happily Ticked Off.
In conclusion, let her lovely comment be an encouragement to all of you struggling with your sons’ or daughters’ tics. It is a testament to science and medicine and, most importantly, LOVE. Anything is possible. There is no need to fear. Something can ALWAYS be done to help your child. And while your baby might not warrant deep brain stimulation (though, thank heavens it is there if you need it), your child will always warrant full acceptance, support and encouragement for the gifts that exist well below the surface of a few tics and twitches.
The heart and soul, not the body, is what we must strive to embrace at all costs. And if you don’t always do that, because you are sad or depressed or defeated, you get to work on forgiveness. Because last I checked, you were never supposed to be the perfect parent. You are simply supposed to your child’s parent. And you are doing your best.
As I mentioned in a previous post, I had the opportunity review a book by the very talented and funny Jessica Thom called “Welcome to Biscuit Land.”
Not unlike the other Tourette book I had the honor of reviewing, “Welcome to Biscuitland” left me feeling both grateful and protective all at once — grateful for brave women like Thom who aren’t afraid to fearlessly write about their experiences with severe TS, but also protective of parents who are new to the confusing syndrome of this disorder.
As I mentioned in my last post, there are some people with Tourette who absolutely jerk, shake, curse and wind up in wheelchairs for their own personal safety when their tics become unmanageable. But there is a much higher percentage of folk who live with medium to mild TS (like my own child) and simply do not fit the stereotype of the shrieking, flailing ticker who illicit stares and insults from the public as ruthlessly as nonsense talk over Kate Middleton’s post-pregnancy belly.
The above disclaimers stated, the absolute facts are that I adored this book — not just for Thom’s honesty, but for her humor. Thom has a way of writing that is so outrageously funny, she immediately put me at ease about her condition. It’s clear from the very beginning of her book — written in the style of a one-year diary — that there is a big difference between Thom inviting us to laugh about the more humorous aspects of her Tourette and having ignorant people laugh at her. Continue reading →
The writer, James A. Fussell, talks in candid first person Technicolor about his experiences growing up with Tourette Syndrome. While this disorder didn’t keep him from becoming an accomplished journalist for the Kansas City Star, it was by no means a walk in the park for him either. His tics were severe, at times completely debilitating.
When Jeff Matovic burst into the office of Dr. Robert Maciunas, he had very few options left. Matovic had suffered for years from Tourette Syndrome, his full-body spasms and outbursts getting progressively worse, to the point that he saw suicide as a viable option. Drugs, physical therapy, prayer — nothing was working. But Dr. Maciunas was a pioneer in deep brain stimulation (DBS), a new therapy that had worked to correct other brain disorders. Could it fix Matovic’s Tourette’s? All Matovic had to do was convince Dr. Maciunas that he was a perfect candidate for the procedure. That, and have several electrical leads — a “brain pacemaker” — implanted into his skull.
Author Jim Fussell is uniquely qualified to tell Matovic’s story—he suffers from Tourette Syndrome as well. Fussell’s job as a feature writer for the Kansas City Star brought him in contact with Oprah Winfrey, who first told him about Jeff Matovic, the “Miracle Man.” As Fussell learned about Matovic’s remarkable journey, he vowed to seek him out. This is their story.
As the mother of a child with mild Tourette, where it borders on “medium” when he is stressed or just dealing with the normal ups and downs of this nutty disorder, I have very strong opinions about this fascinating memoir: Continue reading →
IPG Publishing recently sent me two book. One was “Welcome to Biscuit Land,” by Jessica Thom. This book was an honest, open and candid “diary” written from a woman who lives with severe Tourettes. I read this book in two days and was struck by two things:
Jessica Thomis seriously the most funny person alive. She knows how to spin joke more than Jay Leno on a merry-go-round. I can completely understand why Stephen Fry (of Monty Python fame) included her in his television show Planet Word when it came to discussing the evolution of the curse word. Thom is one of those 10 percent of TS folk who deal with coprolalia: the inability to control obscene language.
Class and kindness rises above any sort of disability.
NOTE: Folks, no one wants their child to deal with uncontrollable curse words. I would be lying if I said that I was immune to fear of my son screaming the F-word at Super King Markets or during a Spelling Bee next year.
At the same time, what Thom taught me through her book and subsequent interviews on national TV shows is that having a “disability” like extreme TS does not keep one’s true elegant soul from shining through. I, for one, would rather have a child with a keen intellect (and kind disposition) like Thom than a “neuro-typical” child who doesn’t involuntarily curse but acts like an ass-wipe.
My cussing can not be blamed on TS. I am tired and have a potty mouth at times. As Thom mentions in her book, her own father does not use her tics as an excuse for any kind of cursing. Like a true dad, he knows the difference and lets her know when she is out of line!
I personally found Thom’s book, and our subsequent back-and-forth e-mails, to be both engaging, encouraging and enlightening.