Monday, April 29, 2013

Marathoning is about Resilience: “A Tough Blow – A Tougher Town” – Tougher Sport

As an avid marathoner and a former Bostonian, I found myself like so many around the world crushed by the news of the devastating events of the Boston Marathon bombing this week. I spent countless hours going through news websites and listening to NPR trying to get my mind to comprehend what happened.

Although I am thousands of miles away, I can see it. I will never be able to achieve a qualifying time for this premiere race, but I can imagine what it might have felt like to be a 4:09 finisher. To see the finish line and anticipate the cheers and hugs from family and friends – all you can think about is crossing that threshold. I have an eight-year-old boy, the same age as Martin Richard, one of three people killed in the blasts. I can imagine looking for him and my other sons and husband in the crowd. I can feel the confusion of the thousands of runners who were told to stop in the middle of a race that many of them had probably prepared for over months or years. I can remember the celebration of a city and state so proud of this iconic event they actually take a holiday so everyone can take part.

As the events unfolded, I read an outpouring of tweets from the international marathon community, stunned and disturbed by the news, as the images of the worlds’ flags blowing from the blast were seared into our consciousness.

The next morning I poured through the Boston Globe, I was reminded about the special bond between runner and spectator. Very few other sports let spectators touch or feed the athletes during the competition. Spectators, with their cow bells and goofy signs, often provide the energy that lifts the runner through the difficult parts of the race. And yet, at this tragedy, it was the spectators that suffered the most damage.

So tragic, so senseless all of this. And yet, “in the night of death, hope sees a star and listening love can hear the rustle of a wing” (Robert Ingersall). What we all saw and read that day and since gives me great hope about our humanity:
·         The first responders and medical teams who signed up for the event thinking they would be handling traffic, dehydration and blisters who then found themselves in the middle of a war zone and just did what needed to be done
·         The residents who took so many stranded runners into their homes and gave them comfort and a way to connect with their families
·         The runners themselves, some of whom gave blood after running an exhausting race
·         The Bostonians who refused to let this stop their city. As Scot Lehigh of the Boston Globe stated in his editorial, “…We won’t be paralyzed by fear. We’ll take reasonable precautions, yes. But we won’t take cover. And we won’t cower. This, after all, is Boston.”

The Boston Marathon will continue to be the iconic event for runners and spectators everywhere. Boston will continue to pull together, recover and thrive. It may have been a tough blow, but as Lehigh said, “it’s a tougher town” with a tougher sport that won’t be brought down.

Tuesday, April 2, 2013

Suicide Risk and Children with Disabilities

Written Originally on March 22, 2013

This morning I was interviewed by the Mary and Melissa Show, a call-in advocacy radio talk show led by two mothers living in the Nation's Capital who share the hurdles of raising kids with disabilities.
Before I launch into this difficult topic, I want to emphasize that people with disabilities who are supported and celebrated for who they are will have a high likelihood of successful and happy lives and rarely, if ever have problems with suicidal behavior.  For many people with disabilities, the suicidal thoughts are less about the direct consequence of the disability and much more about the negative social expectations, exclusion and bullying that can result from the misunderstanding rampant in our society.[1] So while I may be presenting some information today that is concerning for parents about the safety of their children, I want to reassure them that there is a lot we can do to build protective factors for kids and prevent the escalation of despair by knowing what to look for and what to do when warning signs emerge.
That said, here are some concerning statistics on the topic of disability and suicide:
·         Teens with a learning disability such as dyslexia are ten times as likely to die by suicide as someone without a learning difficulty.  One study from Canada examined the suicide notes left by 267 teens, and an alarming 89% of the notes had spelling and grammatical errors indicative of learning disabilities.[2]
·         Childhood ADHD can linger into adulthood and suicide may become a concern. In a recent study cited reported by CNN, 200 adults who had ADHD as children tracked for mental health challenges. A stunning 57% had some type of psychiatric disorder (alcohol abuse, anxiety, depression) and were 5 times more likely to die by suicide. The reporter concluded that people with ADHD don’t tend to grow out of it and a combination of depression and impulsivity for an ADHD adult can have deadly consequences.[3]
·         A recent report on Disability Scoop that shared that children with autism were 28th times more likely than typically developing kids to contemplate or attempt suicide. Those who were bullied, male, black or Hispanic, age 10 or older and those with lower socioeconomic status appeared to be at highest risk.[4]
What can parents of children with disabilities do?
As a mother of a teen with severe dyslexia and as someone who lost her brother to suicide after his struggle with bipolar disorder, I am very concerned about this connection. Fortunately, I feel confident that there are things we can do to be effective advocates for and supporters of our kids to help them flourish and thrive while managing the challenges they endure.

·         Challenge the social barriers. Our first step in this process is to overcome the social barriers to this difficult topic. Knowing that social barriers also exist for issues related to living with disabilities, we have a double-duty piece of work cut out for us. For the issue of suicide, there are many misperceptions we can work toward dismantling with effective dissemination of stories and science. When we share powerful stories of hope and resilience, we let others know that suicidal behavior and struggles with disability ebb and flow and that people who experience these life challenges have much more in common with others than they do have difference. These stories help people create roadmaps for recovery and coping and are critical in shifting the misperceptions that can lead to marginalization. The second strategy is science. We need to present solid, credible data that helps shape the case for understanding that disability and mental illness concerns are not about moral failings, but about complex social, psychological and biological functioning that can be affected with treatment, accommodation, and coping.

·         Know the model of suicide risk and suicide warning signs. If I am going to recommend one book for people interested in learning more about suicide risk, I encourage them to read Thomas Joiner’s Why People Die By Suicide (2005, Harvard University Press). In this theory, Joiner says that those who kill themselves not only have a desire to die, they have learned to overcome the instinct for self-preservation. That is, wanting death, according to Joiner, is composed of two psychological experiences: a perception of being a burden to others (perceived burdensomeness) and social disconnection to something larger than oneself (thwarted belongingness). By themselves, however, neither of these states is enough to move a person to act on the desire for death, but together with an acquired capacity (or fearlessness) they result in a high risk state for suicide. Acquired capacity can come in the form of innate temperament (risk-taking/impulsivity), learned conditioning from provocative and painful experiences, or access to and knowledge of lethal means. Understanding this model can help parents look for themes in communication and patterns of behavior with their children.

Additionally, parents should be aware of the expert consensus  guidelines for suicide warning signs (summed here with the mnemonic IS PATH WARM):
I               Ideation (suicidal thoughts)
S              Substance Abuse
P             Purposelessness
A             Anxiety
T              Trapped
H             Hopelessness
W           Withdrawal
A             Anger
R             Recklessness
M            Mood Change
·         Screening and surveillance for suicidal behavior. Training and screening tools are important weapons in the fight against suicide. Parents, teachers and others who come into contact with youth can quickly learn the warning signs of suicide and how best to link others to care by going through national best practice “suicide prevention gatekeeper trainings” like QPR (stands for Question, Persuade, Refer – for more information: Within one to two hours, lay people can be given the basic skills on what to look for, how to ask the difficult “suicide question,” and how to refer people to qualified mental health and crisis services (see below). Screening tools like those supplied by Mental Health Screening can help parents, educators and primary care physicians quickly assess risk for any number of mental health conditions:

·         Link children to qualified mental health and crisis support when warning signs are identified. Identifying youth at risk is the first step in the chain of survival; linking them to care is the next. Those at risk for suicide and the people who support them need to have quick access to qualified services. Two of the best resources I am aware of are:
o   National Suicide Prevention Lifeline – a free and confidential emotional support to people in suicidal crisis or emotional distress 24 hours a day, 7 days a week
§  1-800-273-TALK (8255) and
o   HelpPro -- HelpPRO, the oldest, most comprehensive Therapist Finder, to help people find qualified suicide intervention mental health professionals
So in conclusion, I have observed tremendous passion in both the disability advocate world and the suicide prevention world. Both fields are fraught with marginalization and misunderstanding, and in both there is a lot of hope fueled by tireless family and friends and people living with these conditions and experiences. I say, let’s pull together and unite in our effort to be heard, be understood, and create change so that people can get back into a “passion for living.”

[1] Disability and Suicide: The Social Factors that Put People with Disabilities at Risk (2/28/2013 by Amanda Lunday)
[3] March 4, 2013: ADHD may continue in adulthood, lead to another psychiatric disorder – Elizabeth Cohen reports
[4] Michelle Diament (2013, March 12). Kids with autism face increased suicide risk.