My Son Is Quite Able: Riding BART

When my son was in fifth grade he was asked to leave his private school because of his disabilities. In the middle of a school day. With no warning. With no plan. Some of you will find this deplorable. Some of you will think they had a right to ask him to leave because they were a private school.

After an investigation by the Department of Justice into whether or not the school violated my son's civil rights under Title III of the American's with Disabilities Act, the case was closed without a finding.

What I do know is that today, on his first day at a school he selected, my fifteen-year-old son, is a better person for having been asked to leave that school.

Why?

That day was a turning point for our family. From the day the school sent my son home he started homeschooling.

We didn't know if it would be a temporary situation or not, but we knew it was the right thing to do for him at that time. It turned out to be the best thing we could have done to lessen the stress he was experiencing there—stress we didn't fully appreciate until he was outside the situation.

Toward the end of the lengthy and often ugly legal process with the school, before the ruling came from the DOJ, my husband was diagnosed with cancer. Since we were homeschooling, my son had the gift of spending my husband's final year of life at home with him. We had no way of knowing that was how life was going to play out, but it worked out that way, and it was a blessing. I am thankful every day that somebody perceived my son's disabilities the way they did or he would have missed that time with his father. And I am so glad his father got that time to see his son happy.

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Making the choice to defend our son's rights was a process that brought us closer together as a family. We regularly checked in with each other and with our son to make sure we wanted to continue the legal process. As soon as one person wanted to stop, we agreed we were done. Fortunately, the DOJ took over the case, and it was out of our hands. We never intended to pursue a civil case. Our goal was to make things right for other children for the future. We didn't see a civil case achieving that goal. Our daughter was an amazing witness when the DOJ came to our home to interview us. She was fiercely protective of the truth and her brother, which hasn't always been the case in their relationship—having a sibling with special needs can be stressful sometimes, but she wanted to make sure it was clear to the attorney just what had and had not happened since she was actually present in his classroom.

And today, on his first day of school, my son rode BART by himself. He also packed his own lunch, got himself dressed in the clothes that he washed, and ready for school on time. He attended his brand new school for seven and a half hours. He was calm. He was confident. He had a great day at school, and he can't wait to go back tomorrow.

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If you didn't know he had Tourette's, you'd be hard-pressed to tell. In fact, even the people who live with him have trouble spotting his very rare tics. As for the Asperger's, well, I just think of that as who he is. I don't even know that I'd be able to separate him from the things that would define his position on the spectrum, nor would I want to. After fifteen years of him being him, I am so accustomed to who he is and how he works, that I rather like his wiring. Our world needs him. Somebody else's oversight of his awesomeness on that day in October of his tenth year was so very clearly a lucky day for the rest of us. They missed out on having the opportunity to watch him grow and learn these past five years. We didn't.

Guess what, world: he is able! Very, very able. Don't let that slip past you this time or y'all might miss out on another five years of watching him in action.

 

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I love you, Bug. I wish Daddy were here to see this. He'd be so incredibly proud of you.

Biopsies And Breakdowns

Blue Beanie MeTuesday we’ll be starting our day at Kaiser with a bone marrow biopsy for Bob, then heading off to Stanford for a number of classes, appointments, and tests.

He’ll be signing paperwork for medical trials. I’ll be taking a caregiver class along with my back-up caregiver, my most awesome sister-in-law, Theresa. Bob will be doing some more blood tests, I believe.

Monday he had blood tests and a pulmonary lung function test. Later in the week it’s another PET scan.

We still have the housing issue to resolve.

The kids are both exhibiting signs of stress, which means Bugs tics are off the hook here at home and Peanut is in full-blown angsty teen mode, convinced we’re ruining her life because she can’t have friends over if they’ve been sick or around people who’ve been sick. All of this is normal and expected. And all of it sucks. For them. For us.

It’s not fair.

It isn’t.

It’s not fair that their father has cancer.

Life is not fair.

It is a shitty thing to learn when you’re eleven and thirteen.

It’s a shitty thing to learn, period.

And as the transplant date comes closer, and the reality of what that means, the possibilities, the risks, the future, comes into view, I need the support of my magical unicorn friends and my real-life friends. Because I’m falling apart.

It’s time for those funny notes you guys send, emails, text messages…those little things that keep me going. Throw some prayers in if you’re so inclined, too.

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Home

Last week was supposed to be our family vacation to San Diego for Bug’s 13th birthday. He wanted to go to Legoland instead of having a party. Since that's where our timeshare is, we planned to make a weeklong trip of it, visit friends, go to the zoo, and enjoy the week together. We planned that before we knew what life had planned for us.

After much discussion, Bob and I decided that I would fly to San Diego with Bug rather than cancel his birthday trip. It was a last-minute decision. It was hard to leave Bob and Peanut behind. I wanted to clone myself. I wanted to be in two places at once.

birthday dude

Bug had an amazing week. He has been obsessed with kiwi birds for years. Only four zoos in the States have kiwi birds, San Diego being one of them. On our last visit, the kiwi bird was in hiding (they’re mostly nocturnal). When we were in D.C., we missed the kiwi bird there, too. Not so, on this trip. The kiwi bird was out and incredibly active. Bug was face to beak with the kiwi bird. It made his year.

excited much_ Kiwi Reflection

We were joined on our adventures by my friend, Tina, and her three children. Bug and Tina’s kids were immediate buddies. At the zoo, at Legoland, and hanging at our condo, they were like lifelong friends.

piggy  electric slide

But, Bob had a rough week. His kidneys were struggling to process the effects of the chemo. He ended up needing IV fluids 3 of the 5 days I was gone. At four hours each sitting, that’s a long haul, and Peanut had to be flexible, going to doctor’s appointments, helping her dad, getting shuffled to family member’s.

size doesn't matter

By the end of the week, I just wanted to be home. Then, the weather in San Francisco caused our flight to be delayed by 2 1/2 hours. Bob’s white blood cell count was down to .7, which meant that as soon as we walked through the door we had to hit the showers at 2am to get the airport germs off of us before heading to bed.

Saturday, I took Bob for another round of double Neupogen shots. Still, after this morning’s blood work, his white blood cell count is down to .2. (Normal is between 3-12.) Fortunately, his platelets have stopped dropping, so no blood transfusion today. And his body temperature is staying in the prescribed range, so no ER visits.

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While it was important to Bob and to me to give Bug this special birthday, I’m glad to be home.

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Somewhere Between Zen and Mommy Dearest

4145693281_2f80c4732b_o A few days ago I started to get glimpses of The Calm. I started to let go of trying to plan for the unknown. I started to Just Be.

Realizing I couldn’t make Monday get here any faster. Realizing I couldn’t make the cancer change it’s shape or course. Realizing I couldn’t plan for the unknown. I started noticing my stomach wasn’t in knots. My shoulders weren’t hanging out with my earlobes. My tongue wasn’t trying to bore a hole in the roof of my mouth.

I had taken my hands off the wheel. (Thank you, Peter, for writing those words when I needed to read them most.)

Well, mostly.

My hands were off the wheel, but I was still turning around to yell at the kids in the back seat. I am the mom, after all.

Instead of exchanging gifts with each other this year, my husband asked if we could do a family portrait before he starts to (in his words) look like an alien. This is the one gift he wants from us. That’s all.

In the Hallmark version of this movie, the kids put on their well-coordinated outfits (lovingly chosen for them by a mother who doesn’t want to appear on Awkward Family Photos) with somber, yet joyful, attitudes as they prepare to give their father this one special gift.

In reality, it required a fucking crowbar to get them to bathe. A cat of nine-tails was required to get them into their respective outfits and shape their hair into something other than a rat’s nest. On the drive to the location, Bug started to chant about how much he hates jeans. Upon arrival, he stood in the parking lot, refusing to open his eyes. Asperger’s and Tourette’s aren’t the best syndromes to be dealing with when you’re trying to do a photo shoot. Even when you’ve prepped.

During the photo shoot, Bug was doing his best impersonation of Marvin the depressed robot from Hitchhiker’s Guide to the Galaxy. His dad and I reminded him this was the one gift his father had requested this year. “Yeah, I know, that’s why I’m trying not to complain constantly.”

In an effort to guarantee my position as Mother-of-the-Year, I whispered into his ear, “When you complain to the person you’re giving the gift to, it’s no longer a gift. This may be the last Christmas gift you get to give your father, so I suggest you pry your head out of your ass and skip the complaining altogether.” Or something along those lines. It may have been kinder, it probably wasn’t. While Bug is overly sensitive about some things, there are other things that require a rubber mallet approach in order to grab his attention. Sometimes, it’s hard to gauge which one you’re dealing with. This felt like a Rubber Mallet situation. Either way, I’d been sitting in the passenger seat of a car going God only knows where (literally) and had reached the end of my rope, so he was getting a Rubber Mallet approach.

God bless him and his teen angst if he didn’t reply, “I know, Mom,” in that droll way they do—one party snotty attitude and one part “fine, I’ll do it if you’ll just get off my case.” Just like I did any time my parents asked me to do ANYTHING when I was between the ages of eleven and nineteen.

So, yeah. I’m expecting my Mother-of-the-Year plaque in the mail any day now. I’ll also be doing a shitload of explaining about how mothers make mistakes and say stupid things—this mother in particular. I have a gold medal in that event—over a decade running now. I’m actually a record-holder in a few events, which is why we call it the Therapy/College Fund.

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And Now, We Wait

I am not a patient person, but I’m learning. I’m being forced, like a buttered-elephant through a rabbit hole, inch-by-buttery-squeaking-inch, I learn to wait.

I learn to wait to be able to pray again.

I learn to wait for Bug’s tics to settle so he can sleep.

I learn to wait for my own sleep to come.

I learn to wait while my back heals from overdoing it the day before.

I learn to wait for doctor’s appointments.

I learn to wait for test results.

I learn to wait for answers to questions I don’t really want answered because I didn’t really want to ask them in the first place—What’s the prognosis? What is the stage? What is the treatment protocol? When will it start? Will he make it? Where will we be for Christmas? Will there be a next Christmas? How will we do this? Will I be strong enough?

Why?

Why?

Why?

And then I remember I’m a buttered elephant in need of a shower. Have you ever tried to fit a buttered elephant into a standard-sized shower? Fuckin’ A.

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Living With the Actual Tourette's Boy

I was going to go to bed. Read. Relax. Enjoy some time where the kids weren’t at each other like a married couple in their 40th year of a loveless union.

Instead, I’m up. I’m listening to my 12yo sit at the dining room table working to relax himself with a pile of LEGO bricks and a podcast on Wolfram|Alpha as his body runs through a series of vocal tics, the most offensive of which sounds like he’s going to vomit.

Tics wax and wane, like the phases of the moon. Not with the predictability of the lunar cycles, however. Instead, people with Tourette Syndrome and their families ride the waves of tics as they come and go. Sometimes the tics overlap one another. They can be vocal or motor in nature. Complex or simple. And every person’s experience is a little bit different.

For all that my son has been through because of TS, he’s surprisingly nonchalant about it most of the time. It’s just who he is.

But as his mother, in the other room, listening to him choking, sniffing, gagging—it hurts my heart. And it sucks.

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The Family Tard Cart

If I could afford it, this would be our family car.

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Instead of shirking away from the word retarded, we embrace it. Steal it’s power back.

If this was our car, we’d paint “Family Tard Cart” on the side in gothic letters and cruise around town with pride.

Why? Because that’s who we are. We’re all special. And we rock. We have acronyms and long words after our names like ASD, TS, OCD, ADD, and Depression, and Migraine, and Fibromyalgia, and we’re crazy homeschoolers, too. Oh, Lord!

I think it’s high time the special needs population reclaimed the words used against them.

It wasn’t that long ago that “queer” was an insult. Now there’s a Queer Nation.

Not so many decades ago, my son would have been locked away, considered possessed in some cultures. My daughter would have been thought too nervous and fragile. I would have been kept on the upper floor, never seen, and seldom referred to. Now, thanks to modern medicine, and education, we roam free. Scary, huh?

There’s no reason our short bus has to be ugly. There’s no reason for us to hide in shame. There’s no reason for us to let words like “retard” belong to our enemies.

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PSA: 5th International Scientific Symposium on Tourette Syndrome a Huge Success

image Front of the Class Poster

The national Tourette Syndrome Association, Inc. brought together 250 delegates and internationally renowned scientists, clinicians and other experts from 17 countries, including Argentina, Belgium, Canada, France, Germany, Iceland, Israel, Japan, South Korea and Spain, to share and discuss the latest research into and treatments for Tourette Syndrome. The Symposium was held in New York City on June 12 and 13, and focused on the advances made since the last Symposium which was held in 2004. Notable hot topics were deep brain stimulation (DBS); the development of animal models for the study of TS; and the use of cognitive behavioral therapy in reducing tics. However, fields as wide and diverse as genetics, neuroimaging, neuropathology, epidemiology and neuroimmunology were all covered during the course of the conference. Presenters conveyed their research findings through platform presentations, small group meetings/workshops and poster displays.
The Symposium was co-chaired by the TSA Scientific Advisory Board co-chairs, Peter J. Hollenbeck, Ph.D., Purdue University; Jonathan Mink, M.D., Ph.D., University of Rochester Medical Center; and John T. Walkup, Johns Hopkins School of Medicine. The program was developed by a Steering Committee chaired by Kevin Black, M.D., Washington University School of Medicine.
Dr. Black commented on the success of the event and the high level of the material presented. "The quality of the presentations was superb. We heard breaking news on several fronts: a report from the CDC on the first nationwide survey of people diagnosed with TS, an update on the search for genes that cause TS, an fMRI study of how the TS brain's organization develops in adolescence, discussion of animals that have tic-like movements and may help us find new treatments, and compelling results on PANDAS with a very lively discussion of their implications. Much of the meeting was organized to shed light on the results of the recent NIH-funded multi-site controlled study of CBIT (Comprehensive Behavioral Interventions for Tics), presented for the first time at this Symposium. The study results were very compelling and I believe will help bring an important new treatment to the standard care of people with TS. It is not a cure, but it looks to be an important tool for helping manage and reduce symptoms."
The TSA's Early Career Research Award was presented to the TSA grant recipient Nicole Calakos, M.D., Ph.D for her work on synaptic and circuit level insights for TS and OCD using mouse models. Dr. Calakos was also among the 57 scientists who presented posters. Among these, six were scholarship awardees. The scholarships are part of TSA's commitment to encouraging young researchers to focus on pursuits related to TS.
Feedback from attendees was overwhelmingly positive and they stressed how the symposium provided a unique opportunity to hear not only the latest information about TS advances in medicine and treatment, but also to meet other medical and scientific professionals from around the world to share information, ideas and experiences. Attendees are now anxiously awaiting the next TSA symposium and expressed a desire for it to be held sooner than the next meeting which is scheduled to take pace 5 years later in 2014.
On Sunday, June 14, the final day of the Symposium was a 'Family Day' when local TS families were invited to hear Dr. James Leckman of the Yale Child Study Center talk about the medical and scientific advances presented at the Symposium. Douglas Woods, Ph.D., also  spoke about CBIT and the results of the NIH-funded study.
For more information and photos from the symposium, check out the upcoming issue of Inside TSA which should arrive in your mailbox in mid-September. Don't receive the TSA quarterly newsletter? Click here to become a member and start receiving issues along with exclusive access to past issues on our website!

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PSA: Musical Minds on NOVA

NEW YORK - JUNE 3:  Neurologist Dr. Oliver Sac...

Image by Getty Images via Daylife

The national Tourette Syndrome Association, Inc. would like to inform you about an upcoming episode of "NOVA," entitled "Musical Minds" which will air on Tuesday, June 30 at 8:00 pm EST. Please check your local PBS listings for exact stations and times.

In this program, Dr. Oliver Sacks, world-renowned neurologist and author, explores how the power of music can make the brain come alive, how music affects the brain and how it can impact some neurological disorders. 

New York State percussionist Matt Giordano, and his mother, Kathy, appear in the show.  Matt, who has Tourette Syndrome, talks about the impact of music on his life.  This documentary was filmed in 2008 and originally aired on the BBC in the UK last year.

Dr. Oliver Sacks' long list of books include Awakenings (the film version starred Robin Williams as Dr. Sacks), The Man Who Mistook his Wife for a Hat, Oaxaca Journal and An Anthropologist on Mars. His most recent is Muiscophilia Tales of Music and the Brain. features Matt Giordano, Tobias Picker and other individuals with Tourette Syndrome.

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PSA: Tourette Syndrome Awareness Month

TS Awareness Month is May 15 - June 15, 2009

Bayside, NY – May 15, 2009 - From May 15 to June 15, the Tourette Syndrome Association (TSA)—the only national, voluntary health organization for people with Tourette Syndrome (TS)—joins the hundreds of thousands of families affected by TS to help raise awareness of this baffling disorder during National Tourette Syndrome Awareness Month.
Marked by involuntary body movements and vocal sounds called “tics,” it is estimated that some 200,000 Americans have the disorder, with millions more manifesting associated conditions. National Tourette Syndrome Awareness Month, which was first established by TSA in 1997, provides an opportunity for the TSA, its chapters and others in the TS community to educate the public about this much misunderstood and misdiagnosed condition.
Throughout the month, local TSA chapters across the country will work to raise awareness, increase education and reduce stigma associated with TS. One such event is Government Relations Awareness Week from May 25 to June 1. During this week, TSA encourages its chapters and families to hold district meetings not just with elected officials, but also with community leaders to raise local, state and federal elected officials' awareness of issues impacting families living with Tourette Syndrome.
Some of the dozens of awareness events taking place across the country organized by national TSA Chapters include:
Georgia Chapter: Twitch & Shout Adventure Week, May 31 – June 5, Cape Twin Lakes in Winder
New Jersey Chapter: TS Day, Golf Tournament and Dinner, 12:00 p.m., Old York Country Club, Chesterfield
Long Island, NY Chapter: Family Fun Day, May 30, 1:00-5:00 p.m. at Jericho High School
Texas Chapter: Jazz Fundraiser, “An Evening of Jazz -- I Groove to my Own Move." May 15 in Dallas
Pennsylvania Chapter: Annual Legislative Breakfast, May 13 at 10:00 a.m. in the Capitol Building to show appreciation for the work of the state’s legislative leaders and promote awareness about TS
New Mexico Chapter: Annual Picnic, May 30 at 12:00 p.m. at Roosevelt Park in Albuquerque
Utah Chapter: Various school presentations throughout the month and a contest for Chapter T-shirt design

In addition, as part of the ongoing program partnership between TSA and the National Center for Birth Defects and Developmental Disabilities at the U.S. Centers for Disease Control and Prevention, now in its fifth year, a dozen professional education and outreach programs for medical, school-based and allied professionals, including sessions on Comprehensive Behavioral Interventions for Tics (CBIT) will take place during TS Awareness Month, including programs in Huntington, WV; Tulsa, OK; Lawrence, KS; Ocean City, MD; Keaau HI; Oakley, KS and Goldsboro, NC.
Marked by involuntary movements and vocalizations called tics, Tourette Syndrome is an inherited neurological condition frequently misunderstood and misdiagnosed, affecting more than 200,000 Americans. Founded in 1972, the national Tourette Syndrome Association celebrates 37 years of service to the TS community worldwide.  As the only national, voluntary health organization for people with TS, the TSA has a three-pronged mission of education, research and service and directs a network of 31 Chapters and more than 125 support groups across the country For more information about Tourette Syndrome, Tourette Syndrome Awareness Month or any of the events listed, please view additional pages at the Tourette Syndrome Association site.

Media/Press Inquiries: 718-224-2999, ext. 236; email: tracy.flynn@tsa-usa.org

[My apologies for not getting this announcement posted sooner. I think Hubs’ chemo brain is becoming contagious.]

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PSA: 5th International Scientific Symposium Tourette Syndrome

5th International Scientific Symposium Tourette Syndrome

Who is the target audience?
• Basic scientists
• Physicians (general medicine)
• Pediatricians
• Family Practice
• Neurologists
• Psychiatrists
• Internists
• Psychologists
• Nurse Practitioners
• Mental Health Therapists
• School Psychologists
• School Nurses
• Social Workers
• Clinical investigators


From the Tourette Syndrome Association (my favorite organization for TS):

Symposium Description

As part of its mission to identify current research advances, disseminate them among the scientific and medical communities, and establish networks of basic and clinical scientists, the Tourette Syndrome Association Inc.(TSA) is proud to sponsor the 5th International Scientific and Clinical Symposium on Tourette Syndrome. As with the four previous symposia convened by the TSA, this meeting will provide a forum for updating current research findings for both basic scientists and clinical researchers as well as allied medical practitioners.

Since the last Symposium convened in 2004, significant advances have been made in understanding the basic underpinnings of Tourette Syndrome (TS) as well as in the application of new and refined approaches to clinical care. The biological and medical literature on Tourette syndrome has grown exponentially. Because TS research depends on findings from many research disciplines, information flow and communication across disciplines are vital for the continued efficient and effective study and treatment of this disorder. This Symposium will serve as a highly effective venue for such cross-disciplinary communication. The program includes an expert faculty that will present on genetics, neuroimaging, neuropathology, clinical trials (medication and non-medication), epidemiology, neurophysiology, neuroimmunology and descriptive/diagnostic clinical science. The Symposium will set the agenda for future TS research efforts and improved clinical care.

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Front of the Class

Hallmark Hall of Fame

Image via Wikipedia

One Last Reminder!
to Tune-In
This Sunday, December 7, 2008
as Hallmark Hall of Fame Presents
"Front of the Class"
on CBS
9:00 pm EST (check your local listings to confirm)

(If setting your DVR – remember to extend the recording time as the football game may go overtime)
An Inspiring, True Story about a Young Man's Triumph over Tourette Syndrome
Based on the Life of Long-Time TSA Member and Friend, Brad Cohen

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Cory Friedman's Blog

As I was perusing James Patterson's website, I noticed that Cory Friedman now has a website and blog of his own. Part of the site is a forum where people are contributing their own stories of Tourette Syndrome. I encourage you to visit his site, and read Against Medical Advice. For each member of our family that reads it, another asks to read it next. It's truly inspirational, whatever your struggles.

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PSA: Hallmark Hall of Fame movie: "Front of the Class"

I wanted to pass along this message from the Tourette Syndrome Association about an upcoming TV movie based on Brad Cohen's story.

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“Front of the Class: How Tourette Syndrome Made Me the Teacher I Never Had”, a best-selling and award-winning book from Brad Cohen, is being made into a "Hallmark Hall of Fame" movie to air on CBS, Sunday, December 7, 2008.

The film is currently being shot in Shreveport, Louisiana and stars Treat Williams and Patricia Heaton as Brad’s parents, and actor Jimmy Wolk as Brad.

“This has been a very exciting time for me, my wife Nancy, my parents, my brother and of course all my friends and family who have supported me for so long,” Brad said. “I'm very excited to celebrate these positive times in my life with so many people. It is my goal that the movie will make a difference in the lives of millions of TV viewers across the nation.”

Front of the Class (published in September 2005) is an inspiring true story of incredible challenges and unwavering determination. As a child with Tourette Syndrome, Brad was beaten, mockedand shunned. Some thought he was         possessed by the devil. Others, including members of his own family, refused to be seen with him in public. As an adult, Brad overcame all odds to become an award-winning teacher of the year for the state of Georgia.

Brad is an inspiration in overcoming life’s challenges. Nothing, not even Tourette Syndrome, stops him from pursuing—and achieving—his goals.

Brad is an Area Lead Teacher for Cobb County Schools in Atlanta, and is responsible for teaching the teachers. Prior to that he taught 2nd grade, 3rd grade and was a technology lab teacher. Brad has served as Vice President of the Board of Directors for the Tourette Syndrome Association of Georgia. Part of Brad’s past, included being the team mascot “Homer” for the Atlanta Braves Baseball team.

A motivational speaker who inspires people to keep a positive attitude and to follow their dreams, Brad was featured on Oprah, People Magazine and Inside Edition after the release of his book, which was named the “Education Book of the Year” for the Independent Book Publishers. He has attended several national TSA conferences where he was a speaker and panelist.

Please check the TSA website for updates and more information about the film and Brad’s TV appearances.

Click here to see Brad’s TSA print public service announcement.

Media/Press Inquiries: 718-224-2999, ext. 236; email: tracy.flynn@tsa-usa.org

                                                                        
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Book Review: Against Medical Advice

Book cover of Book cover via AmazonIn early October, I was asked by the publishers of James Patterson's latest book, Against Medical Advice, if I'd like a copy to review. This isn't a work of fiction, as Patterson usually writes. Instead, Patterson is joined by Hal Friedman in telling the story of Cory Friedman, Hal's son, and his struggle with the most severe case of Tourette Syndrome I've even encountered.

When your child ends up in the hospital from tearing muscles due to physical tics, you aren't dealing with your run-of-the-mill case of Tourette's. When you've worked your way through 60 medications and still can't find peace for your child, that child gives up...almost. When an addiction to alcohol is the lesser of two evils, it's time for radical actions.

Against Medical Advice
is told in Cory's voice, with his blessing. This is as much Cory's book as it is his father's or Patterson's. Cory's story will grab you, turn you upside down, challenge you, and give you an ending you never saw coming.

I read it in a single night.

Then, Bug read it. It took him two nights, but he was captivated by the story, as well. Peanut and Hubs are planning to read it together, then we'll be passing our copy along. We may even pick up a few more for family members and friends. I will confess this was my first Patterson novel, and I was absolutely blown away.

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1/10th of Who We Are

IMG_4516 Yes, we are a family with a special needs child. But, you need to know something. While it enriches the definition of our family, it is not all-encompassing. We are so much more. Our child is so much more.

 

We are often faced with thinking about this 1/10th of our identity for a disproportionate amount of our time. Bug’s tics are not our focal point. They do not define him. They do not explain our life. They do not shape our days.

 

Yet, in order to allow our family to be the other 9/10ths of who we are, we are forced by others to focus on the 1/10th. We are called upon to defend, explain and justify.

 

Why? Because fair and right don’t happen in a vacuum. Fair and right require education, advocacy, and perseverance. Fair and right ask you to check your world view at the door. Check it. Change it. Reform it.

 

We remain, as always, cautiously optimistic that the world will become a better place, that others will see the light, that doing the right thing will become the thing that is done.

 
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PSA: Tourette Syndrome Survey--Updated Links

The links to the surveys referred to in my post about the University of Wisconsin at Milwaukee research project on Tourette Syndrome have been fixed. You can either pop back to the post, or click on the links below:

To participate in the Adult survey go to:

https://www.surveymonkey.com/s.aspxsm=X_2bx_2b8RocCCBAKzsphe791g_3d_3d

To participate in the Child survey go to:

https://www.surveymonkey.com/s.aspxsm=dsaJRuMnG2qQTJybvb_2fYLw_3d_3d:

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