Ignorance, Enlightenment, Leadership
In Washington yesterday and today on business, I took a break last night to attend a Congressional reception hosted by TSA, the Tourette Syndrome Association.
Senator Hillary Rodham Clinton was an honorary co-chair of the event, for which she helped arrange the LBJ Room in the U.S. Capitol. She also delivered brief remarks at the very beginning. Unfortunately, I was about 15 minutes late and missed her talk. But I did have the honor of hearing remarks from an amazing cast of Congressional leaders, including House Majority Leader Steny Hoyer, Senate Majority Leader Harry Reid, Congressman Chet Edwards (D-TX), Senator Ben Cardin (D-MD), Senator Gordon Smith (R-OR), and the granddaddy of health issues, Senator Ted Kennedy (D-MA), who thanked Senator Smith for his leadership in making the Senate side of the Hill more aware of Tourette Syndrome (TS).
If I remember correctly, Smith has a brother with TS. Our family has also been impacted by the disorder. Regular readers of Central Sanity may recall that our only son, now 17 and a junior in high school, has TS, which is “a neurobiological disorder characterized by tics – involuntary, rapid, sudden movements and/or vocal outbursts that occur repeatedly.�
Various medicines and therapies can help control the tics, but the precise cause of TS remains unknown and, as of today, there is no cure.
Through the first link above, readers will find that, “Although the symptoms of TS vary from person to person and range from very mild to severe, the majority of cases fall into the mild category.� True enough. However, our son – whose few years on this planet have been anything but mild in any aspect of his life – is one of the minority with an extremely severe form of TS.
Diagnosed around nine or 10 years old, he went through a living hell in his pre-adolescent years, suffering through violent and often painful tics that caused deep back bends and spasms of his internal musculature, along with the more typical twitches and vocalizations, all of which was complicated by OCD and other variables.
I was traveling a lot at the time; much more than I do now. The few days I was at home, the situation was bad enough that I thought he should be institutionalized. But his mother – who cared for him 24/7 and went through that living hell with him, each and every step of the way – refused. With the most remarkable, dogged determination I’ve ever seen in any human being, she nurtured him back to health, with assistance from a series of doctors and therapists and educators. Eventually, the doctors found the right mix of medicines, and those – combined with a relatively brief stint in special schools plus regular therapy, plus his evolving maturity and understanding of his disorder – allowed our son to return to “normal� classroom settings by eighth grade.
Today, he is the most remarkable young man: charitable, funny, talented, smart, and involved.
Sadly, if our son had gone through the same experience a generation prior, the outcomes might have been much different.
A former boss of mine had a brother with TS. The ignorance of his family and doctors at the time his brother was a child and first exhibiting signs of TS led to a compromised adulthood. That brother still requires special attention and care to this day.
In the 20-plus years between the childhoods of my former boss’s brother and my son, the TSA was instrumental in raising awareness of the disorder, securing research funds, recruiting doctors to study and treat the disorder, and passing helpful legislation.
But more work remains to be done, including passage of a bill that will further equalize the insurance coverage for physical, mental, and neurological disorders. Known in the last Congress as the Senator Wellstone Mental Health Equitable Treatment Act of 2005 (H.R. 1402), that bill will likely be re-introduced next week, with Ted Kennedy’s son, Congressman Patrick Kennedy (D-RI), and Congressman Jim Ramstad (R-MN) the lead co-sponsors.
A key staffer on this bill in Congressman Kennedy’s office, Michael Zamore, informed me earlier this week that they are looking for additional co-sponsors, from both sides of the aisle. To that end, I’ve contacted the office of my Congressman, Todd Akin (R-MO), asking him to sign on as a co-sponsor, and am doing the same with other offices where I have a good working relationship.
The bill does not require insurance companies to offer mental health benefits, but it does require them – if they already offer such benefits – to simply put them on par with physical health benefits. Even better: According to a December 28 Associated Press story, a study last year in the New England Journal of Medicine “found that the government’s decision to provide parity to federal employees in their health insurance plans did not drive up the cost of mental health care.�
Before my son went through the TS experience, I was one of those people who thought non-physical disorders were over-played and over-diagnosed: “It’s all in their heads; they just need to buck up and deal with it.�
How utterly stupid I was.
Then again, maybe no one can fully appreciate just how debilitating these disorders of the mind can be, until you see one of those disorders almost destroy someone you love.
Hopefully, readers of this post are more enlightened than that. And hopefully, you’ll take the time today to contact your Members of Congress, to encourage them to co-sponsor the mental health parity bill that Congressmen Kennedy and Ramstad are supporting.
Our family – and millions of others – would appreciate it.
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6 Responses to “Ignorance, Enlightenment, Leadership”
Wow, I wasn’t aware of your personal connection with Tourette’s. I had a strong emotional reaction to your story, in part because it is very moving and in part because I’ve had a parallel story with my daughter.
She suffered from an anxiety disorder which is also quite debilitating and horribly misunderstood. It’s called selective mutism, and it’s a severe form of anxiety that affects individuals, almost always beginning in childhood, causing them to be unable to speak in certain social situations even though they speak normally when in comfortable settings and they typically have normal cognitive abilities.
It’s hard to even describe the hell we went through; trying to figure out what was “wrong” because no one (even most health professionals) understands this disorder. Unfortunately popular literature and movies have dramatized cases of traumatic mutism (cases where individuals become mute after a traumatic event), so that out of ignorance some people assume that kids with selective mutism have been abused. Another common false assumption is that kids with this disorder are only seeking attention (which is actually the last thing they want as they are almost always shy and inhibited). So, many kids are punished by well-meaning parents and teachers for “refusing to speak”. This is not only cruel, but highly counterproductive because punishment only worsens the anxiety that is the root cause of the disorder. Still other kids are misdiagnosed with autism because their behavior in social settings sometimes resembles the behavior of autistic kids.
It’s incredibly heart wrenching to see your child struggling like that (my daughter was completely mute except with close family members, and beginning school was a nightmare; she froze up and couldn’t even participate nonverbally in the activities.) The medical literature at the time held out little hope for improvement, so we thought we would be faced with a child who would never be able to develop to her potential or lead a normal life.
Fortunately I was finally able to find enough information to help my daughter, and I became motivated to help other parents. That led to my involvement in a nonprofit advocacy group, the Selective Mutism Group/Childhood Anxiety Network. Just as Pete points out the important work that TSA has done to raise awareness and funds for research for Tourette’s, my group is working to do the same for selective mutism.
On a note of pure, unapologetic maternal pride, I’ll close with this: my daughter came home from school yesterday (7th grade) and informed me that her language arts teacher chose her to compete in the school’s upcoming oratorical contest (one of two students chosen from her class based on their speeches to the class). She’s also planning to audition for a solo part in her school chorus. Did I mention how proud I am of her in overcoming this?
I’m very happy for those of you who Have been able to get the right diagnosis and the right help. Considering the fificulties you’ve experienced, you prabably don’t think of yourselves as particularly lucky.
Without recounting the medical histories of family and friends, I would just like to say a word for those whose conditions are still not easily diagnosable. It can be a life of going from doctor to doctor, collecting a pocketful of diagnoses which the next doctor discounts in favor of his own pet disease. There are still so many conditions not readily understood by the medical community. To finally get a definitive diagnosis and treatment that works is like discovering paradise. What a relief to just get a name for what ails you and stop the suspicions of malingering or hypochondria.
Very, very true, domajot. Sometimes anecdotal evidence is helpful but doctors don’t put much stock in it (and rightfully so- their professional mandate is to base their treatments on well supported evidence). When the traditional avenues fail you though, you have to look for hope wherever you can find it. If you analyze information carefully and try things that “can do no harm”, sometimes you can find answers that traditional medicine hasn’t yet found or acknowledged. The internet is certainly a blessing in this kind of search, and without it my family’s story would have had a much less happy ending.
It is reassuring to read how our representatives can come together when they can identify personally with the issues.
C Stanley,
Thank you so much for sharing the story of your daughter. I would guess that selective mutism, like TS, is among the class of rare (aka, “orphan”) disorders in this country. Remarkably, those diseases each affect 200,000 or fewer people, but collectively affect some 25 million, according to stats from the National Organization for Rare Diseases (NORD). That is another group in which I’ve started to invest some energy, and hope to soon publish an article on their work. Thanks again for sharing.
[...] I wrote last week about a Tourette Syndrome Association event I attended in DC, and a bill they support, co-sponsored by Reps. Kennedy (D-RI) and Ramstad (R-MN). That bill — which would will further equalize the insurance coverage for physical, mental, and other disorders — was reintroduced yesterday. [...]