More on Tim Howard

http://www.mycentraljersey.com/apps/pbcs.dll/article?AID=2010100621038

Tim Howard says Tourette's is a help, not a hindrance

Here is a nice article about Tim Howard, goalkeeper for the U.S. men's soccer team.

Behavior therapy effective in reducing tics

Courtesy of Science Daily: A study at UCLA finds that behavior therapy can be a very effective means of reducing tics in individuals with Tourette Syndrome. Basically, when the individual feels the premonitory urge to tic, s/he is taught to engage in an action that is incompatible with the tic (e.g., instead flinging your arms out behind you cross the in front of your chest).

Now, unfortunately my son tried this method, and we discovered that he is among the minority of individuals who actually will experience more severe tics after implementing this approach. This does not detract from my support of use of the method in general. I am fully in favor of finding non-invasive means of managing TS.

Support NJCTS in the Pepsi Refresh Challenge

Tim Howard, goalkeeper for the U.S. World Cup soccer team, has Tourette Syndrome. He uses the visibility his job brings him to advocate for children with TS. Right now, Tim Howard is participating in the Pepsi Refresh Challenge. By clicking on this link, you can vote for the New Jersey Center for Tourette Syndrome (NJCTS) , the charity Tim is representing. The charity that gets the most votes in this challenge will receive $50,000.

NJCTS provides support for children and families in New Jersey who are dealing with TS through referrals, support groups, advocacy, and research support. Our family has benefited greatly from the services NJCTS provides, and we all ask you to take a minute to click on the link and vote. You do not need to register, and you can vote as often as you like. Thank you!

Politics Northwest | Mary Jane goes to Olympia | Seattle Times Newspaper

Fresh on the heels of news about the New Jersey legislature's approval of marijuana used for medicinal purposes, and a proposal in California to decriminalize use of marijuana by adults, here is a story about bills being discussed in Washington.

I am posting these links here because I believe the medical benefits of marijuana for individuals with disorders such as TS ought to be explored, and I would like to see an end to the stigma surrounding the use of "alternative" treatments.

"Neural Substrates of Self-Regulatory Control in Children and Adults With Tourette Syndrome"

Thanks to Shulamit for the heads-up about this paper.

"Mad But Glad"

-- An interesting video/program about Tourette Syndrome and creativity.

My "other" child

It wasn’t supposed to go like this.

I was thinking of writing about my “other child,” the non-2E kid, the chameleon. I thought I might write about the people over the years who have asked me if my “other child” is gifted, too. I could write a book about "Bilbo” – how, when he was eleven months old, he grabbed my face with both hands and asked “Mama, is that a car over there?” -- when I had no idea he could talk; or how I sent him to pre-school when he was two and a half years old, and in no time he had full control of the teachers and the playground.

Instead, I want to tell you about what B has been doing over the past few weeks.

Two weeks ago, my older son’s tics spiraled out of control. For six hours one day, Origami suffered a steady attack of violent, major tics that followed one after another in five to thirty-second intervals. O could not stand; he writhed, screaming in pain, unable to control his body. B and I took turns holding O down so he would not injure himself. While B held his brother, I scrambled to find help.

While I held O, Bilbo found O’s favorite stuffed animals, his pillow, and his blanket, and brought them to us. Then B rolled up another blanket and fashioned a cushion for his brother’s neck, to minimize the impact and bruising from neck tics. B grabbed another pillow and some spools of wire, threw the pillow on his brother’s stomach, and laid himself across O’s midsection. Then the boys worked quietly on wire sculptures while Bilbo talked to O to distract him from his pain and ticcing. I began to feel as if my help was not really needed.

Bilbo just turned ten. Origami’s issues have had a big impact on B as well as on the rest of the family. We try to protect B and give him his own space and his own share of attention. We take Bilbo to support groups for siblings of children with TS. But while B is a remarkably resilient person, the effects of living with a sibling who has special needs are evident.

B rarely invites friends over for playdates, waiting for times when O will be out. For years, B has defended his brother against teasing and ridicule. Although we have not expected B to help care for his brother, B has assumed that role himself. As O’s tics worsen, B is always watching for situations that might trigger violent tics: B takes his brother’s hand at the mall when he sees O trembling before a tic. At tae kwon do, B runs over to pick O up off the floor after every major tic.

And so it goes. Last week when the boys and I went for our daily run, I had to talk B out of trying to run with his arm around his brother. I assured B that I was capable of helping O, too, and that if they tried to run while so intertwined, odds were that both of them would end up falling. At home, whenever O tics B drops what he is doing and runs to help his brother. People who see Bilbo supporting his brother are impressed by B’s maturity and thoughtfulness. I am proud of B, too, but I also see signs of stress and strain in someone who really should not have to be dealing with these issues. B needs time and space to be his own person, not his brother’s caregiver.

So, Sunday was a very important day; it was the first day of the spring soccer season. Soccer is the one activity Bilbo has that is all his. B has been with most of his teammates for nearly three years; they give B his own little slice of “normal” life. Soccer is the most important part of Bilbo’s schedule. He needs and craves the time to run around, yell, sweat, and just be a boy.

Random noise generators unite!

A young woman describes her experience with TS. I pause to think about how much energy I have put into not making random animal and computer noises over the years....

Current methods for managing TS

Courtesy of www.tourettesyndrome.net, two recent articles on medical management of TS.

http://www.movementdisorders.org/monthly_edition/2009/02/md_article.pdf

-- very interesting and potentially useful article, especially since my son currently has many dystonic tics.

Psychopharmacology of Tic Disorders

Botox and marijuana, together again!

A handy summary of alternative treatments for TS addresses marijuana, Botox, deep brain stimulation, and more.

Dis/comfort

For reasons I cannot easily explain, I have long enjoyed reading the Miss Manners column. While I do not remember her explanations of how to eat, say, snails, one of Miss Manners's responses has stuck in my mind for a number of years.

In this letter, the writer asks Miss Manners how she can convince her sister-in-law, who lost one of her legs, to stop wearing shorts and bathing suits to family barbecues and pool parties. The writer complains that her sister-in-law's stump makes other family members uncomfortable, but the sister-in-law refuses to cover up. In response, Miss Manners suggests that the letter-writer might try looking her sister-in-law in the eye when speaking to her, instead of focusing on her missing leg.

Recently, I find myself thinking about this letter a lot. My son's tics have been severe for several months. We have explained his tics and Tourette's to other people (adults and children) at art class and at tae kwon do. The reaction has been overwhelmingly supportive and positive, even though my son's major tics are painful and sometimes alarming to behold. Some children help O when he has a major tic, other children continue with their work, unaffected. Nobody is complaining about O's tics or shunning him because of the strange things his body insists on doing.

Adults sometimes have a different response than children do, though. Before we explained what was happening, some adults laughed at O's tics. Others are visibly disturbed by them -- whether this is due to concern or personal discomfort is anyone's guess. Some people, including people who have not met O, people who merely hear that he has Tourette's, seem to feel that O should not cause other people discomfort by mingling with them while he is ticcing. If O is not able to control his tics, they say, he should not come to a particular event or participate in some activity, because it is important that everyone who is at said event or activity feels "comfortable."

What does this mean? What is "comfortable," and how is it being measured? What about the comfort of the person who is being excluded because of something he cannot control? In my opinion -- not that anyone asked -- "we want everyone to feel comfortable" is a fuzzy, ill-defined, arbitrary, difficult-to-enforce notion. It is the lamest of lame excuses, and it sounds a lot like "this scares me, and I am going to use my own fear and ignorance as an excuse." To those people, I would say, quit focusing on my child's tics, and learn to look him in the eye.

It's a really big hill, revisited

A while back -- two years ago, now that I think about it, I wrote a post called "It's a Really Big Hill." I was thinking about how people do not grasp what Origami is all about until they have had a one-on-one interaction with him. Here is an excerpt from what I wrote:

In general, it does not take anyone very long to notice that O is "different," but very few people are able to grasp that we are dealing with another degree of "different."

When I tell people that we bought a house with a huge sledding hill in the back yard, they will nod and say something like "Oh, yes, our kids like to sled in the back yard, too." "No, really," I will respond, "You can ski down this thing, it is huge." "Oh yes, we know what you mean," they say. Then they come to our house. "Whoa! That hill is huge!! I had no idea you meant it was that big! How on earth do you mow it?" Seeing is believing, I suppose.

In the same way, we talk to people who will say, "Oh, yes, O seems smart, but don't they have programs for that in school? How far ahead could he be?" Well. There is no good way to quantify Origami's needs without coming across as a jackass, so in general we do not even try. The short answer, though, is: pretty darn far ahead. The longer answer might be more along the lines of, "Well, why don't you come on over and try to mow our back yard?"

I found myself thinking about this again recently, as I did sprints up the hill as part of my speedwork. I guess that oxygen deprivation shook something loose in my brain.

My son's tics have worsened dramatically in the last several months; this is to be expected at his age, but expecting the tics to get worse has not made them easier to handle. No parent wants to see his or her child in pain; it should be obvious to any observer that my son's tics cause him a great deal of pain.

I have written about how severe Origami's tics are. I have talked to friends and relatives about how severe Origami's tics are. Everyone has been wonderfully sympathetic and supportive. But I really do not think anyone understood just what I meant by "severe" until I shared video of O's tics. The extreme always makes an impression -- or is that, seeing is believing?

Let me put it this way: When Origami saw what his major tics look like, he was upset. He deals with the pain and the anxiety all the time, but he had no idea what the rest of the world sees when he tics.

I am not going to share video of Origami's tics on a public blog. Instead, I will share a photo of O enjoying the first snow of the season in our back yard. It's a really big hill, trust me -- or see for yourself.

Meet the new drugs, same as the old drugs?

An article published in this week's New England Journal of Medicine reports that newer antipsychotic medications have the same risk of sudden cardiac death as older antipsychotic medications. These medications commonly are used to treat Tourette Syndrome.

Small blessings

My older son, Origami, had tae kwon do last night. There is nothing unusual about that -- O goes to tae kwon do five or six days per week. Tae kwon do is his second home -- something we did not fully appreciate until O returned to class last Friday after having the flu for an entire week; O walked into the dojang, sat down, removed his shoes, breathed a sigh of relief, smiled, and exclaimed "much better!"



Unfortunately, for reasons we do not fully understand, O's tics now are at their worst during tae kwon do. Master K is teaching O to use breathing control to overcome his tics. Given that O already has gone from having over 100 major tics in class to having ten or fewer, I have to say that breathing control is doing something.



Origami and I have provided some of the classes brief explanations of what is happening. Most of the children and teens in the classes have either asked O a question or two about TS, or they have shrugged and accepted that this is just part of how Origami is. Some of the adults in class find O's tics amusing, which puzzles me. In the "flipping" tic, Origami's arms are trying to wrench themselves out of their sockets; the pain inherent in this tic should be obvious to any adult.



O's major tics, when they are especially severe, are unnerving for some of the other children. I can understand this. Imagine being ten or eleven years old and watching someone else your size being flung to the ground, squealing in pain, by some invisible force several dozen times during a class. I think that would alarm most kids. Two weeks ago, I watched one boy's eyes grow large like saucers even though we had explained what was happening. He ran out of class to tell his father "Dad, that boy can't control his body. That's why he keeps doing that!"



I wondered how this boy would act around O during future classes. In the past, we have encountered people who turn and flee upon learning that O has Tourette's, making little effort to conceal their terror. There have been plenty of children who just assumed that O must be contagious, and treated him like a leper. This time, did we manage to make our message clear?



So, there we were last night at tae kwon do. It was a fairly large class, with several new adults who did not hear our TS mini-lecture. O is relaxed during small classes, but the larger a class is, the more he tics. The class lined up for kicks and blocks, and O flipped to the ground. Then it was time for forms, and O flipped to the ground at the beginning of nearly every form. After forms, Master K taught the class some self-defense and hap ki do moves. O was paired with the saucer-eyed boy; how would this pairing go?



I was most relieved to see that everything was -- absolutely normal. The other boy forgot his own strength and flipped O, who is lighter than ever after being sick, onto the mat. O got up and patiently explained the moves to the other boy. They practiced for a while, then devolved a bit into pretending and slow-motion fighting, and fits of giggles. There was some serious work, some goofiness, and no major tics. They looked like two normal boys doing normal boy things -- which is our goal, I think.

Given to Fly

“I am alive. I am free. I am flying with the wind. I am me." – Against Medical Advice, by James Patterson and Hal Friedman

Like my son, Cory Friedman wants to fly. Cory seeks the sensation of flight on jet skis and dirt bikes. My son builds rockets and airplanes and watches birds, and dreams of taking flight with them. Cory and my son have something else in common. They both have Tourette Syndrome (TS).

By unhappy coincidence, I read Against Medical Advice, in which James Patterson and Hal Friedman (Cory’s father) tell Cory’s story, on a day when my own son was experiencing his worst bout of severe tics to date. I read with one eye on the book and my other on my son, who was flipping and jerking and throwing himself on the ground with such violence that he looked, for all intents and purposes, like a rag doll being hurled by an angry, invisible giant. As I read Against Medical Advice, I experienced the relief of encountering someone who really understands what life with TS is like, as well as the pain of recalling our past struggles. The book also renewed my resolve to stay the course and continue to manage our son’s challenges as we have over the past year.

Cory and his parents spent years trying to understand Cory’s behavior and how best to manage it. They traveled far and wide to try new drugs, more drugs, various therapies, different experts. School was a struggle, home life was stressful. Cory’s compulsions caused all kinds of large and small difficulties. His mother abandoned her career to manage his care, record his ups and downs, and navigate the public-school minefield. Some treatments seemed to work – for a while. Other alternatives were unmitigated disasters from the beginning. This is how it is with TS. Symptoms wax and wane, like phases of the moon, only with no regularity. When a patient goes to the doctor in despair and tries a new drug, and it seems to work, there is no way to determine if the drug actually is helping the patient, or if the patient has merely entered a waning phase. After a while – perhaps a few weeks, perhaps a few months – the drug no longer seems to help. Has the drug lost its efficacy, or was it never effective in the first place? Should the drug be discontinued, or should the patient try a higher dose – or add another drug?

Against Medical Advice can be painful to read; every time the reader thinks Cory has hit bottom, every time Cory thinks life cannot get any worse, it does. Eventually, after many years, Cory stops taking the massive amounts of medication he has been on for so long, and finds the strength within himself to face his TS and manage his symptoms and his behavior. Have I spoiled the book by telling you that? No – this book really is about the journey more than it is about the destination.

I must admit that certain aspects of this book made me uncomfortable, in more than just a “been there, done that” way. Having already put myself in Cory’s parents’ shoes, and having walked far in those shoes in real life, I found that a number of situations described in the book left me thinking “There is no way I would let my child get into that situation/ get away with that behavior!” Now, this is a delicate subject for me, and I hesitate to mention it, and do not want to criticize the Friedmans’ parenting. I know how hard it is to parent a child with TS. I know the stress, and I know what it is like to feel as if others are watching you and judging you and your child based on behaviors they do not and cannot understand. Given that, I feel it would be petty of me to question the Friedmans’ decisions. It is enough to say that our situations, while similar, are different, and there is no “one size fits all” approach to handling these children. I appreciate the Friedmans’ decision to speak up and share a difficult story. I hope that their effort helps to raise awareness about TS.

Against Medical Advice, is a quick, dare I say easy, read. That is to say, I read the entire book in about ninety minutes; Cory’s story, however, is harrowing. Names and certain details have been changed to protect the innocent, or perhaps merely to avoid legal difficulties. I am sure I am not the only parent of a child with TS who read this book and is trying to determine who is who. One particular episode sent me running to the computer in an effort to determine the real identity of “Dr. Holmes,” in the hope that we might safely avoid that doctor in the future. (I think I was successful!) I would have liked the book to have more details about what did work and what were the positive elements in Cory’s life along the way. Additional information about the impact of Cory’s issues on his mother also would have been appropriate. We are told that she gave up her career, and that she was “an angel,” but we are given few glimpses into her reactions, into how she felt, how she coped for so many years. Cory’s father offers the reader his epilogue; Cory’s mother should have had her say, too.

***************************************

About my title for this piece: “Given to Fly” is a song by Pearl Jam, a personal favorite as well as a very appropriate choice here. Obviously, I cannot speak for Cory, but I suspect my son's fascination with flying stems from a desire to overcome his frustration with a body that has let him down so often, for so long. He sees flying as a way to feel free.

A wave came crashing like a fist to the jaw
Delivered him wings,
"Hey, look at me now"
Arms wide open with the sea as his floor
Oh, power, oh
He's... flying
Whole
High... wide, oh

-- E. Vedder

Reflections on TS – a year without meds

My son has been off of all meds since Christmas Eve, 2007. It has been quite a year. We have witnessed dramatically reduced volatility, improved sleep, astronomically elevated levels of distractibility – ADHD combined with a twelve-year-old brain – and, in recent months, ever-worsening tics.

For years, I have said that tics are the least of my concerns when it comes to living with TS. Origami has had obvious tics since he was three years old, but his tics always were of what I would call “moderate” severity: he had many tics, they were always present, but all were relatively small. To an outsider, he looked like an extremely fidgety child who stammered. This year, especially in the last three months, Origami’s TS has changed from “moderate” to “severe.”

First, there was the extreme echolalia. If you have never witnessed someone retelling – re-enacting – all of Over the Hedge or an “Indiana Jones” movie, complete with sound effects, well, you just will have to take me at my word when I tell you that it is an excruciatingly awful experience. I am not sure if the echolalia has ebbed recently, or if we just have become numb to it, but it is not inducing migraines in the same way as it was earlier in the year.

The tics went to a new level of severity in September. The worst one is a “flipping”tic. O lunges forward at the waist, arms flung stiffly out behind him. He looks like he is about to do the long jump or dive into a swimming pool. On a really bad tic, O will actually flip all the way over! On several occasions, O has had one of these tics at tae kwon do – while in the middle of a jump or spinning kick. It really hurts to see the poor kid flip over in mid-air and go flying across the room; O already has injured his groin doing this, and I worry that he will suffer more serious injuries in the future.

Efforts to stem the flipping tic using habit reversal have backfired. We have tried to help O resist the tic by crossing his arms over his chest. The result: the tic comes out anyway, through O’s head and neck. So, now, O also spends much of the day jerking his head to one side. This tic is rather pronounced: I was walking toward O at the mall last week. Before it registered in my mind that the child was O, I found myself thinking that that poor child had an obvious, painful-looking head/neck tic. O later confirmed that the tic is, indeed, painful.

So, what is a parent to do? The available medications help – a little bit. But the available medications also have many side-effects. We discontinued meds when we decided that the side-effects were worse than O’s symptoms. Now, I am not so sure that I can still say that. However, I also believe that O is old enough to have a voice in his own treatment. I have mentioned meds as a possible option to manage the tics and the tic pain, and O has expressed absolutely no interest in resuming medication. So, I do my best to help. I offer regular back rubs, pain relief, and heat, along with concern and sympathy, and I keep hoping that the tics will decrease – soon.

Idiots with publishing contracts

I walked into the "Borders Express" at the mall tonight and saw this book prominently displayed on a shelf at the front of the store. Now, I do have a sense of humor. I enjoy "South Park" much more than I probably should, and I absolutely understand the importance of being able to laugh at ourselves. But this book is stupid, offensive, pointless and unnecessary. So I complained, and the guy working at the store was considerate enough to remove the book from the front display; of course, he might have put it right back out front as soon as I left, who knows. Other people with whom I have interacted would have just shrugged and said "So what?" so this guy gets points for at least pretending to care.

So here I sit, imagining what the next titles in this series might be: Crippled Chimps? Retarded Houseplants? I think my time will be better spent giving the TSA a "heads up."

Thank you

Thank you to everyone who contributed to my fundraising effort for the Tourette Syndrome Association. I am pleased to say that I reached my fundraising goal, and I finished the race. I would have liked to post a better time, but at least I kept going when I wanted to quit. In a momentary lapse of reason, I registered for another half-marathon in November; I hope to post a better time in that race.

Tics

My son is having a bad tic week; yesterday, while we were buying groceries, the tics were so bad that he was in pain. This also was the first time I have seen him have big, jerky tics -- the kind that draw the attention of the most inattentive passers-by. Most of the time, O looks like a very, very fidgety kid, but this was an entirely different level of intensity.

The tics were distressing for O, but at the same time it was interesting to observe how aware he is of the cycles of his tics. He told me that every two to three months, he experiences a week when his tics are much worse than usual. During this week, the tics will be disruptive and often painful, but he knows that their intensity will subside again after a few days. I think recognizing what is happening, even if O does not know why it is happening, makes it easier to accept the bad days.