Applaudable Abuse

What is the most worrying and distressing thing about the recent video of a child singing homophobic remarks in a church?

The fact that a small boy has stepped up in front of adults, to sing ‘Ain’t no homos’, after stating ‘the bibles right’?

Or that the parents and adults, met the song with a standing ovation, warranting applause and jeers of praise?

The desperate state of hate and homophobia has projected subtle child abuse into the American religious sphere. That same hate has welcomed its sinister occurrence with applause.

The American dream has been spat on and dismissed as folly, and consequently what America was supposed to avoid (theocracy, war and inequality) has embraced and accepted as its own identity. Alas America has become a former shell of what it once was.


Is Anybody Listening to Veterans?

Memorial Day Approaches
Published on May 25, 2012 by Paula J. Caplan, Ph.D. in Science Isn’t Golden

Memorial Day approaches, close to a decade after I became alarmed about what would happen to the new generations of war veterans, worried that their understandable, profoundly human reactions to war would be marginalized as “mental illness” and that that would distance the rest of the country — the 93% of us who have never even served in the military — from them and their suffering, it only gets worse.
In our intensely psychiatrized nation, far too much of which rests on the manual of psychiatricdiagnosis in which every human feeling is called a mental disorder, it has been far too easy for civilians to think one of three things: (l) I don’t want to try to help veterans, because it’s too upsetting to think about what they must go through; (2) I’d love to help, but they’re mentally ill with Post-traumatic Stress Disorders and other diseases, so they’d probably attack me; or (3) I’d love to help, but they’re mentally ill, and I’m not a therapist, so I wouldn’t know what to do and might even make them worse.
Combine those attitudes and beliefs with many veterans’ soul-destroying isolation, because they are afraid if they talk about what they have been through, we will think they are mentally ill or we will judge them harshly or we just won’t understand or what we hear will upset us, and it’s no wonder that civilians often assume they have nothing in common with war veterans. That last assumption is something we found in the Harvard Kennedy School study we did, in which we implemented The Welcome Johnny and Jane Home Project, simply having an untrained civilian who is not a therapist listen — with respect, without judgment or even comments or questions, in nearly total silence but with total concentration— to whatever a veteran from any war wants to describe of their experiences at war, trying to come home, or both. In that study and in other places, after the listening sessions are finished, the veterans have without fail described their session in positive terms, saying it was unique, that no one had ever given them the chance to say whatever they wanted to say and just listened, and the civilians have often expressed surprise that, in the words of one, “I discovered we have so much in common.” That statement I believe reveals the widespread attitude among civilians that, “If you’re a veteran, you and I probably have absolutely nothing in common.” What do they learn when they listen to a veteran? They learn about their common humanity. They learn that, although they might assume they could never understand or connect with someone who is labeled mentally ill, if you listen to a person who is suffering, free from the distancing that labels and jargon create, then instead of thinking “a mentally ill person,” you think “a person who feels intense grief, loss, terror, shame, innocence destroyed, moral anguish, spiritual confusion and crisis.” Those, any of us can understand.
At the conference called “A Better Welcome Home” that we held last November hosted by The Ash Center for Democratic Governance of Harvard Kennedy School, we presented nearly 30 ways of helping veterans heal without either pathologizing them as mentally ill or — the almost invariable outcome of such pathologizing — using high-risk approaches such as psychiatric drugs which can occasionally help at least somewhat but are far too often given to veterans in multiples of three kinds at a time and are probably at least partly responsible for the ongoing rates of suffering reported by the military at the VA. These ranged from physical exercise to meditation to working in the arts or community projects to the use of service dogs to the listening sessions and more. The 5-minute videos of each of these approaches can be found at http://www.youtube.com/playlist?list=PL51E99E866B9D735E, and each is accompanied by contact information for the speaker and a list of several ways that any civilian can help with that approach.
One of the conference videos is of Wick Sloane and Kathleen O’Neill, who created a program for the 450 veterans who are students at Bunker Hill Community College (BHCC), providing a rich array of kinds of support and help. Sloane often writes for Inside Higher Education, an online publication where he reported last November 11 that, in contrast to the numbers at BHCC, the nation’s 31 most selective colleges combined had only 232 undergraduate veterans (http://www.insidehighered.com/views/2011/11/11/essay-annual-count…). He placed an asterisk after 232 to indicate that that is an approximate number, because some of those institutions do not even keep track of the numbers of students who are veterans. Of the 31, some have no veterans as undergraduates, and my alma mater, Harvard, went from 2 in the fall of 2010 to … 2 in the fall of 2011. This is inexcusable, because colleges should be actively recruiting veterans, not waiting to see if any bother to apply.
That is just one illustration of some official numbers that show the widespread failure to take action to help veterans. In every community, any civilian could offer to listen to a veteran’s story, and if they want to read up a bit first, they can read Chapter 6 of my book and/or look at the second of the two nine-minute videos on the home page of this website. Any civilian can look at the videos on the Harvard Kennedy School website, pick two or three subjects that grab their interest, watch the videos, and use the contact information to get in touch and get involved.
An exciting, new program to involve hundreds of communities in truly helping veterans — and doing so in nonpathologizing, low-risk ways — is the Staff Sergeant Donnie D. Dixon Center for Military and Veteran Community Support. Director of this program, which is affiliated with Easter Seals, an organization with a long history of creating community connections for people who have been pathologized and cast out, is Colonel (Retired) David Sutherland. Colonel Sutherland retired from the Army earlier this month, and his last position before retiring was as Special Assistant in the Office of the Joint Chiefs of Staff, specializing in Warrior and Family Support. What this meant was that he headed a program that sent him and his staff constantly traveling around this country, finding out what was being offered to veterans in hundreds of communities and finding out what else is needed. In that work and in his new position, Commander Kim Mitchell is his tireless and compassionate assistant in the work that, in Colonel Sutherland’s powerful words, is aimed to wipe out “the epidemic of disconnection” that so devastates our veterans.
Congressman Bob Filner has introduced in the U.S. House of Representatives H.R. 456, which would declare every Veterans Day a National Day of Listening to Veterans, when every civilian should listen with respect and without judgment to a veteran’s story. Congressman Charles Rangel has signed on as a co-sponsor, and I hope that readers of this essay will contact their members of the House to urge them to become co-sponsors and bring the resolution to a vote and also to contact their Senators to urge them to introduce a similar resolution in the Senate. The same resolution could be passed in any state or by any citygovernment as well.
I also hope, as I have urged here before, that every civilian who reads this essay will on Memorial Day or some other day offer to listen to the story of a veteran. All across this country, for the sake of our veterans and for the health of the nation, we need to ensure that every community where a veteran lives makes sure that veterans will know that in their own community, there are six people or three or even one who have cared enough to listen, who have offered to connect. I am a strong supporter of jobs, education, and healthcare for veterans, but in the absence ofunderstanding and connection in the community, too much of the spirit-killing isolation will continue.

Is Anybody Listening to Veterans?

Memorial Day Approaches

Memorial Day approaches, close to a decade after I became alarmed about what would happen to the new generations of war veterans, worried that their understandable, profoundly human reactions to war would be marginalized as “mental illness” and that that would distance the rest of the country — the 93% of us who have never even served in the military — from them and their suffering, it only gets worse.

In our intensely psychiatrized nation, far too much of which rests on the manual of psychiatricdiagnosis in which every human feeling is called a mental disorder, it has been far too easy for civilians to think one of three things: (l) I don’t want to try to help veterans, because it’s too upsetting to think about what they must go through; (2) I’d love to help, but they’re mentally ill with Post-traumatic Stress Disorders and other diseases, so they’d probably attack me; or (3) I’d love to help, but they’re mentally ill, and I’m not a therapist, so I wouldn’t know what to do and might even make them worse.

Combine those attitudes and beliefs with many veterans’ soul-destroying isolation, because they are afraid if they talk about what they have been through, we will think they are mentally ill or we will judge them harshly or we just won’t understand or what we hear will upset us, and it’s no wonder that civilians often assume they have nothing in common with war veterans. That last assumption is something we found in the Harvard Kennedy School study we did, in which we implemented The Welcome Johnny and Jane Home Project, simply having an untrained civilian who is not a therapist listen — with respect, without judgment or even comments or questions, in nearly total silence but with total concentration— to whatever a veteran from any war wants to describe of their experiences at war, trying to come home, or both. In that study and in other places, after the listening sessions are finished, the veterans have without fail described their session in positive terms, saying it was unique, that no one had ever given them the chance to say whatever they wanted to say and just listened, and the civilians have often expressed surprise that, in the words of one, “I discovered we have so much in common.” That statement I believe reveals the widespread attitude among civilians that, “If you’re a veteran, you and I probably have absolutely nothing in common.” What do they learn when they listen to a veteran? They learn about their common humanity. They learn that, although they might assume they could never understand or connect with someone who is labeled mentally ill, if you listen to a person who is suffering, free from the distancing that labels and jargon create, then instead of thinking “a mentally ill person,” you think “a person who feels intense grief, loss, terror, shame, innocence destroyed, moral anguish, spiritual confusion and crisis.” Those, any of us can understand.

At the conference called “A Better Welcome Home” that we held last November hosted by The Ash Center for Democratic Governance of Harvard Kennedy School, we presented nearly 30 ways of helping veterans heal without either pathologizing them as mentally ill or — the almost invariable outcome of such pathologizing — using high-risk approaches such as psychiatric drugs which can occasionally help at least somewhat but are far too often given to veterans in multiples of three kinds at a time and are probably at least partly responsible for the ongoing rates of suffering reported by the military at the VA. These ranged from physical exercise to meditation to working in the arts or community projects to the use of service dogs to the listening sessions and more. The 5-minute videos of each of these approaches can be found at http://www.youtube.com/playlist?list=PL51E99E866B9D735E, and each is accompanied by contact information for the speaker and a list of several ways that any civilian can help with that approach.

One of the conference videos is of Wick Sloane and Kathleen O’Neill, who created a program for the 450 veterans who are students at Bunker Hill Community College (BHCC), providing a rich array of kinds of support and help. Sloane often writes for Inside Higher Education, an online publication where he reported last November 11 that, in contrast to the numbers at BHCC, the nation’s 31 most selective colleges combined had only 232 undergraduate veterans (http://www.insidehighered.com/views/2011/11/11/essay-annual-count…). He placed an asterisk after 232 to indicate that that is an approximate number, because some of those institutions do not even keep track of the numbers of students who are veterans. Of the 31, some have no veterans as undergraduates, and my alma mater, Harvard, went from 2 in the fall of 2010 to … 2 in the fall of 2011. This is inexcusable, because colleges should be actively recruiting veterans, not waiting to see if any bother to apply.

That is just one illustration of some official numbers that show the widespread failure to take action to help veterans. In every community, any civilian could offer to listen to a veteran’s story, and if they want to read up a bit first, they can read Chapter 6 of my book and/or look at the second of the two nine-minute videos on the home page of this website. Any civilian can look at the videos on the Harvard Kennedy School website, pick two or three subjects that grab their interest, watch the videos, and use the contact information to get in touch and get involved.

An exciting, new program to involve hundreds of communities in truly helping veterans — and doing so in nonpathologizing, low-risk ways — is the Staff Sergeant Donnie D. Dixon Center for Military and Veteran Community Support. Director of this program, which is affiliated with Easter Seals, an organization with a long history of creating community connections for people who have been pathologized and cast out, is Colonel (Retired) David Sutherland. Colonel Sutherland retired from the Army earlier this month, and his last position before retiring was as Special Assistant in the Office of the Joint Chiefs of Staff, specializing in Warrior and Family Support. What this meant was that he headed a program that sent him and his staff constantly traveling around this country, finding out what was being offered to veterans in hundreds of communities and finding out what else is needed. In that work and in his new position, Commander Kim Mitchell is his tireless and compassionate assistant in the work that, in Colonel Sutherland’s powerful words, is aimed to wipe out “the epidemic of disconnection” that so devastates our veterans.

Congressman Bob Filner has introduced in the U.S. House of Representatives H.R. 456, which would declare every Veterans Day a National Day of Listening to Veterans, when every civilian should listen with respect and without judgment to a veteran’s story. Congressman Charles Rangel has signed on as a co-sponsor, and I hope that readers of this essay will contact their members of the House to urge them to become co-sponsors and bring the resolution to a vote and also to contact their Senators to urge them to introduce a similar resolution in the Senate. The same resolution could be passed in any state or by any citygovernment as well.

I also hope, as I have urged here before, that every civilian who reads this essay will on Memorial Day or some other day offer to listen to the story of a veteran. All across this country, for the sake of our veterans and for the health of the nation, we need to ensure that every community where a veteran lives makes sure that veterans will know that in their own community, there are six people or three or even one who have cared enough to listen, who have offered to connect. I am a strong supporter of jobs, education, and healthcare for veterans, but in the absence ofunderstanding and connection in the community, too much of the spirit-killing isolation will continue.

The Coming Special Needs Care Crisis
The special-needs population is growing. Government funding is shrinking. The coming crisis for millions of parents.

What could really save Hillary Toucey’s life is a personal-care attendant to help with her 7-year-old son, Eli. Dark-haired, fair-skinned, and fragile, Eli suffers from a raft of health problems: cerebral palsy, celiac disease, epilepsy, asthma, and what his mom calls “pretty severe” autism.





His speech is “kind of garbled”; he has leg braces and a wheelchair; seizures render him incontinent at night; and he has acute sensory sensitivities. He cannot bear to touch Styrofoam or the paper wrappings on crayons. Loud music sends him into a panic. When his first-grade class took a field trip this Christmas to see The Cajun Nutcracker, “we lasted three minutes,” says Toucey.



Eli is extremely attached to his mother. Toucey spends as much time with him as possible, but since her divorce, the 32-year-old Louisianan has been attending nursing school in the hopes of escaping her hand-to-mouth existence. When her husband left in November 2009 (two weeks before their 10th anniversary and four days after Toucey had surgery for a thyroid tumor), he took the car with him. Toucey isn’t sure when she’ll be able to afford another one.



Eli’s seizures and social issues make it all but impossible to leave him with a random babysitter. “There’s only a handful of people he can be with,” says Toucey. Having one of the state’s personal-care attendants (PCAs) come in for 30 hours a week would make a world of difference: the attendant could take him to therapy, help him practice life skills like brushing his teeth and showering, watch him while Toucey studied. Maybe then she could give more attention to her other kids: 11-year-old Jonah, himself diagnosed with Asperger’s, who cries easily and doesn’t have many friends; and Charlotte, “a perfectly healthy, wonderful, brilliant” 9-year-old who her mom fears will fall through the cracks. “I feel horrible,” says Toucey. “I really have to carve out time for her.” Toucey has been told that the PCA bureaucracy can take “forever,” and she calls the agency constantly to make sure the process hasn’t stalled. Taking care of the essentials is pretty much all she can handle these days. Says Toucey matter-of-factly, “I have no life.”



Now and again, the spotlight falls on the challenges of raising special-needs children. In 2008 Sarah Palin captured public attention with her son Trig, who has Down syndrome. This election cycle, Rick Santorum did so with heartbreaking stories about 3-year-old Bella, who suffers from Trisomy 18. Dramatic parenting moments often take the spotlight: stories of diagnosis, acute health crises, surprise breakthroughs.



But for most parents, it’s the day-to-day stuff that consumes them: the hours of therapy, the doctor visits, the financial pressures, and the grinding anxiety that comes with it all. It is a rough, often isolating road. And one that promises to become even more challenging as our society enters a new, more complicated era of caregiving. That era is coming in part because many of the medical and social advances that have improved the lives of special-needs individuals have also increased the burden of caring for them. For instance, people with Down syndrome were once lucky to survive to age 30; today, the average lifespan is 55. This presents parents (and society more broadly) with the challenge of somehow providing for an adult child decades after their own deaths, a situation complicated by the fact that the Down population develops Alzheimer’s at a rate of 100 percent, typically in their 40s or 50s.



Then there is the 800-pound gorilla in the room: autism. In late March, the Centers for Disease Control issued an estimate that 1 in 88 children now fall on the autism spectrum. While debate rages over the roots of the “epidemic,” this swelling population is placing increasing strains on our health-care, education, and social-services systems. A study released last month put the annual cost of autism in the U.S. at $126 billion, more than triple what it was in 2006. The bulk of those expenses are for adult care. Geraldine Dawson, chief science officer for the advocacy group Autism Speaks, calls the situation “a public-health emergency.” And if you think things are tough now, she cautions, just wait until autistic teens start aging out of the education system over the next few years. “We as a nation are not prepared.”


Saya Barkdoll doesn’t remember much about the meeting at which a grim-faced neurosurgeon told her that the kindest thing to do was to let her newborn daughter die. The baby, Taylor, had been born with multiple malformations, and her prognosis was grim. “They took us into this room—it was really intense, with about 20 doctors and nurses—to show us the result of this MRI,” recalls the 32-year-old massage therapist. “It was not good. They sat us down and drew us pictures. They were basically saying Taylor had little to no brain mass.”



“I didn’t believe them,” says Barkdoll. “I had not even held her yet, but I could see life in her.” Her girlish voice takes on a hard edge: “We fired that neurosurgeon.”



Seven years later, Taylor is an outgoing first-grader thriving at her local public school in Silver Springs, Md. She’s big into dress-up, Monster High dolls, and Taylor Swift. And though the little girl’s health remains delicate and she can neither run nor write clearly, Taylor suffers no cognitive delays. “She’s totally there,” Barkdoll beams.



Getting Taylor this far, however, has exacted a steep toll on her mom. For the first few years, Barkdoll did nothing but tend to her daughter as Taylor underwent multiple surgeries and extensive therapy. Barkdoll and Taylor’s dad, Kevin, originally opted not to marry so as not to risk a combined household income that could jeopardize their daughter’s government benefits. By the time Taylor was 3, the relationship had crumbled under the strain of constant caregiving. “We lost sight of each other,” says Barkdoll sadly.



It is perhaps unsurprising that the pressures of parenting special-needs children prove too much for many couples. There is a commonly cited statistic that the divorce rate among the parents of autistic children is 80 percent. (Toucey mentioned it during our talk.) Recent studies have debunked this figure, yet it persists among parents because it feels so true. “Based on my and my friends’ experience, that stat makes complete sense,” asserts journalist Hannah Brown, the mom of a teenage boy with autism and the author of a new novel, If I Could Tell You, about the challenges of parenting autistic children. Of her son’s condition, she says, “I tried to fight it, but it completely took over my life.” Brown recalls that when she and her husband split up, she was initially embarrassed to tell the staff at her son’s school. As it turned out, she chuckles, “they were really good at dealing with it because they deal with it all the time!”



Even when marriages survive, such long-term caregiving can have a corrosive impact on parents’ well-being. Research indicates that the mothers of special-needs children have higher stress levels and poorer health than other parents. One 2009 study found that the mothers of older autistic children had levels of the stress-related hormone cortisol similar to those found in combat soldiers and sufferers of post-traumatic stress disorder.



Part of the problem is that the experience is so isolating. Not only are parents overwhelmed by the practical matters of caregiving, they often have a tough time relating to people with “normal” children. “When people call you and are like, ‘Oh, I’m so stressed out, my plans for Disney are falling through, blah blah blah,’ I can’t relate to that,” says Toucey. “I’m like, ‘My kid stopped eating three weeks ago and is on a liquid diet, and we’re wondering if we’re going to have to put a feeding tube in him.’”



For parents whose children have behavioral problems, the situation can be even trickier. “When my son was younger and his behavior less manageable, people didn’t invite us over that much,” says Brown. “And I can’t really blame them.”



The arrival of a special-needs child brings an onslaught of warnings about risks and limitations rather than the usual fantasies of a baby’s limitless promise. “You receive an overwhelming amount of information, and most of it is talking about everything that may go wrong,” says Rep. Cathy McMorris Rodgers, whose 4-year-old son, Cole, has Down syndrome. Soon after Cole’s delivery, the doctor briefed the Washington state congresswoman and her husband on Cole’s increased risk for leukemia, hearing difficulties, vision problems, and thyroid issues. “It was a long list,” she says, and more than a little dispiriting.



Cole’s colleague, Mississippi Rep. Gregg Harper, faced a similar litany when his 22-year-old son, Livingston, was diagnosed at age 4 with Fragile X syndrome, the most common inherited mental disability. But the couple pushed on. “We threw away a lot of the stuff and said, ‘We’re not going to accept that,’” says Harper’s wife, Sidney.


Like many parents of special-needs children, Sidney found herself swallowed up by her child’s condition. “Your whole life revolves around figuring out what to do to help him,” she says. Quitting her nursing job, Sidney drove Livingston to endless therapy sessions (with his infant sister, Maggie, in tow), enrolled him in an early-intervention program, and put him in a mothers-day-out class to help his socialization. Told that Livingston would never swim or ride a bike, his mom signed him up for swim lessons and literally strapped him to a specially outfitted bicycle until he could ride like a pro. “The more they told me he wouldn’t do something, the more I took him to do it,” she says.



Both Harpers get misty-eyed talking about their son’s achievement. “Our goal was to have him graduate from high school,” says Sidney. “That was it: get him through the 12th grade.” Today, Livingston is enrolled in a pilot program at Mississippi State University designed for students with intellectual disabilities. Gushes the congressman:“He’s living in a dorm, eating in the cafeteria, going to classes. He’s living the life!”



And yet … for all Livingston’s progress, his future remains a question mark. The hope is that after two of three years at college, he can find some sort of job (he has experience working at a family friend’s restaurant) and, with a little luck and more oversight, live basically on his own. But as his father softly acknowledges, “We don’t know what the long term is.”



Part of what makes special-needs parenting so daunting is that the load often does not lighten with time—that golden day when one’s child is more or less self-sufficient never arrives. In fact, many parents report that the school years are by far the easiest. Autism Speaks’s Dawson says she frequently hears the shift out of school described as “falling off a cliff, because so few services are available after you exit high school.” In the wake of high school, she says, about 40 percent of these young adults have no activity outside the home, and the same percentage have no social activity.



Finding appropriate housing for an adult child with special needs is one of the biggest challenges. Residential facilities are in short supply, even for the well off and well connected. Just ask Rep. Pete Sessions. The Texas Republican has an 18-year-old son, Alex, with Down syndrome, who attends 10th grade at a special school in Dallas. Alex will never be able to live on his own, says Sessions, and the programs for young adults with Alex’s needs tend to be full and/or prohibitively expensive. Instead, the congressman hopes to “cobble together” an unofficial group home with a few other families—an increasingly popular choice. “Generally what happens is a group of parents who all have the same needs get together and buy a community house or find an apartment,” Sessions explains. “Alex can have a bright, bright future,” he says hopefully.



For her part, Hillary Toucey assumes she will be Eli’s caregiver for the rest of her life—and she hates to think about what will happen when she’s gone. “It’s very scary what the future holds,” she says. “Right now my plan is to be around as long as possible and to save as much money as possible.”



Maybe a little later, when she’s not “struggling just to make ends meet,” she will be able to focus more on long-term planning. But for now, she has more pressing concerns, like getting Eli to therapy, keeping an eye on his schooling, trying not to flunk her classes, and, of course, calling to find out when that PCA might arrive. And so she waits—and tries to keep her head above water.
Article: Michelle Cottle (Via Newsweek)

The Coming Special Needs Care Crisis

The special-needs population is growing. Government funding is shrinking. The coming crisis for millions of parents.

What could really save Hillary Toucey’s life is a personal-care attendant to help with her 7-year-old son, Eli. Dark-haired, fair-skinned, and fragile, Eli suffers from a raft of health problems: cerebral palsy, celiac disease, epilepsy, asthma, and what his mom calls “pretty severe” autism.

His speech is “kind of garbled”; he has leg braces and a wheelchair; seizures render him incontinent at night; and he has acute sensory sensitivities. He cannot bear to touch Styrofoam or the paper wrappings on crayons. Loud music sends him into a panic. When his first-grade class took a field trip this Christmas to see The Cajun Nutcracker, “we lasted three minutes,” says Toucey.

Eli is extremely attached to his mother. Toucey spends as much time with him as possible, but since her divorce, the 32-year-old Louisianan has been attending nursing school in the hopes of escaping her hand-to-mouth existence. When her husband left in November 2009 (two weeks before their 10th anniversary and four days after Toucey had surgery for a thyroid tumor), he took the car with him. Toucey isn’t sure when she’ll be able to afford another one.

Eli’s seizures and social issues make it all but impossible to leave him with a random babysitter. “There’s only a handful of people he can be with,” says Toucey. Having one of the state’s personal-care attendants (PCAs) come in for 30 hours a week would make a world of difference: the attendant could take him to therapy, help him practice life skills like brushing his teeth and showering, watch him while Toucey studied. Maybe then she could give more attention to her other kids: 11-year-old Jonah, himself diagnosed with Asperger’s, who cries easily and doesn’t have many friends; and Charlotte, “a perfectly healthy, wonderful, brilliant” 9-year-old who her mom fears will fall through the cracks. “I feel horrible,” says Toucey. “I really have to carve out time for her.” Toucey has been told that the PCA bureaucracy can take “forever,” and she calls the agency constantly to make sure the process hasn’t stalled. Taking care of the essentials is pretty much all she can handle these days. Says Toucey matter-of-factly, “I have no life.”

Now and again, the spotlight falls on the challenges of raising special-needs children. In 2008 Sarah Palin captured public attention with her son Trig, who has Down syndrome. This election cycle, Rick Santorum did so with heartbreaking stories about 3-year-old Bella, who suffers from Trisomy 18. Dramatic parenting moments often take the spotlight: stories of diagnosis, acute health crises, surprise breakthroughs.

But for most parents, it’s the day-to-day stuff that consumes them: the hours of therapy, the doctor visits, the financial pressures, and the grinding anxiety that comes with it all. It is a rough, often isolating road. And one that promises to become even more challenging as our society enters a new, more complicated era of caregiving. That era is coming in part because many of the medical and social advances that have improved the lives of special-needs individuals have also increased the burden of caring for them. For instance, people with Down syndrome were once lucky to survive to age 30; today, the average lifespan is 55. This presents parents (and society more broadly) with the challenge of somehow providing for an adult child decades after their own deaths, a situation complicated by the fact that the Down population develops Alzheimer’s at a rate of 100 percent, typically in their 40s or 50s.

Then there is the 800-pound gorilla in the room: autism. In late March, the Centers for Disease Control issued an estimate that 1 in 88 children now fall on the autism spectrum. While debate rages over the roots of the “epidemic,” this swelling population is placing increasing strains on our health-care, education, and social-services systems. A study released last month put the annual cost of autism in the U.S. at $126 billion, more than triple what it was in 2006. The bulk of those expenses are for adult care. Geraldine Dawson, chief science officer for the advocacy group Autism Speaks, calls the situation “a public-health emergency.” And if you think things are tough now, she cautions, just wait until autistic teens start aging out of the education system over the next few years. “We as a nation are not prepared.”

Saya Barkdoll doesn’t remember much about the meeting at which a grim-faced neurosurgeon told her that the kindest thing to do was to let her newborn daughter die. The baby, Taylor, had been born with multiple malformations, and her prognosis was grim. “They took us into this room—it was really intense, with about 20 doctors and nurses—to show us the result of this MRI,” recalls the 32-year-old massage therapist. “It was not good. They sat us down and drew us pictures. They were basically saying Taylor had little to no brain mass.”

“I didn’t believe them,” says Barkdoll. “I had not even held her yet, but I could see life in her.” Her girlish voice takes on a hard edge: “We fired that neurosurgeon.”

Seven years later, Taylor is an outgoing first-grader thriving at her local public school in Silver Springs, Md. She’s big into dress-up, Monster High dolls, and Taylor Swift. And though the little girl’s health remains delicate and she can neither run nor write clearly, Taylor suffers no cognitive delays. “She’s totally there,” Barkdoll beams.

Getting Taylor this far, however, has exacted a steep toll on her mom. For the first few years, Barkdoll did nothing but tend to her daughter as Taylor underwent multiple surgeries and extensive therapy. Barkdoll and Taylor’s dad, Kevin, originally opted not to marry so as not to risk a combined household income that could jeopardize their daughter’s government benefits. By the time Taylor was 3, the relationship had crumbled under the strain of constant caregiving. “We lost sight of each other,” says Barkdoll sadly.

It is perhaps unsurprising that the pressures of parenting special-needs children prove too much for many couples. There is a commonly cited statistic that the divorce rate among the parents of autistic children is 80 percent. (Toucey mentioned it during our talk.) Recent studies have debunked this figure, yet it persists among parents because it feels so true. “Based on my and my friends’ experience, that stat makes complete sense,” asserts journalist Hannah Brown, the mom of a teenage boy with autism and the author of a new novel, If I Could Tell You, about the challenges of parenting autistic children. Of her son’s condition, she says, “I tried to fight it, but it completely took over my life.” Brown recalls that when she and her husband split up, she was initially embarrassed to tell the staff at her son’s school. As it turned out, she chuckles, “they were really good at dealing with it because they deal with it all the time!”

Even when marriages survive, such long-term caregiving can have a corrosive impact on parents’ well-being. Research indicates that the mothers of special-needs children have higher stress levels and poorer health than other parents. One 2009 study found that the mothers of older autistic children had levels of the stress-related hormone cortisol similar to those found in combat soldiers and sufferers of post-traumatic stress disorder.

Part of the problem is that the experience is so isolating. Not only are parents overwhelmed by the practical matters of caregiving, they often have a tough time relating to people with “normal” children. “When people call you and are like, ‘Oh, I’m so stressed out, my plans for Disney are falling through, blah blah blah,’ I can’t relate to that,” says Toucey. “I’m like, ‘My kid stopped eating three weeks ago and is on a liquid diet, and we’re wondering if we’re going to have to put a feeding tube in him.’”

For parents whose children have behavioral problems, the situation can be even trickier. “When my son was younger and his behavior less manageable, people didn’t invite us over that much,” says Brown. “And I can’t really blame them.”

The arrival of a special-needs child brings an onslaught of warnings about risks and limitations rather than the usual fantasies of a baby’s limitless promise. “You receive an overwhelming amount of information, and most of it is talking about everything that may go wrong,” says Rep. Cathy McMorris Rodgers, whose 4-year-old son, Cole, has Down syndrome. Soon after Cole’s delivery, the doctor briefed the Washington state congresswoman and her husband on Cole’s increased risk for leukemia, hearing difficulties, vision problems, and thyroid issues. “It was a long list,” she says, and more than a little dispiriting.

Cole’s colleague, Mississippi Rep. Gregg Harper, faced a similar litany when his 22-year-old son, Livingston, was diagnosed at age 4 with Fragile X syndrome, the most common inherited mental disability. But the couple pushed on. “We threw away a lot of the stuff and said, ‘We’re not going to accept that,’” says Harper’s wife, Sidney.

Like many parents of special-needs children, Sidney found herself swallowed up by her child’s condition. “Your whole life revolves around figuring out what to do to help him,” she says. Quitting her nursing job, Sidney drove Livingston to endless therapy sessions (with his infant sister, Maggie, in tow), enrolled him in an early-intervention program, and put him in a mothers-day-out class to help his socialization. Told that Livingston would never swim or ride a bike, his mom signed him up for swim lessons and literally strapped him to a specially outfitted bicycle until he could ride like a pro. “The more they told me he wouldn’t do something, the more I took him to do it,” she says.

Both Harpers get misty-eyed talking about their son’s achievement. “Our goal was to have him graduate from high school,” says Sidney. “That was it: get him through the 12th grade.” Today, Livingston is enrolled in a pilot program at Mississippi State University designed for students with intellectual disabilities. Gushes the congressman:“He’s living in a dorm, eating in the cafeteria, going to classes. He’s living the life!”

And yet … for all Livingston’s progress, his future remains a question mark. The hope is that after two of three years at college, he can find some sort of job (he has experience working at a family friend’s restaurant) and, with a little luck and more oversight, live basically on his own. But as his father softly acknowledges, “We don’t know what the long term is.”

Part of what makes special-needs parenting so daunting is that the load often does not lighten with time—that golden day when one’s child is more or less self-sufficient never arrives. In fact, many parents report that the school years are by far the easiest. Autism Speaks’s Dawson says she frequently hears the shift out of school described as “falling off a cliff, because so few services are available after you exit high school.” In the wake of high school, she says, about 40 percent of these young adults have no activity outside the home, and the same percentage have no social activity.

Finding appropriate housing for an adult child with special needs is one of the biggest challenges. Residential facilities are in short supply, even for the well off and well connected. Just ask Rep. Pete Sessions. The Texas Republican has an 18-year-old son, Alex, with Down syndrome, who attends 10th grade at a special school in Dallas. Alex will never be able to live on his own, says Sessions, and the programs for young adults with Alex’s needs tend to be full and/or prohibitively expensive. Instead, the congressman hopes to “cobble together” an unofficial group home with a few other families—an increasingly popular choice. “Generally what happens is a group of parents who all have the same needs get together and buy a community house or find an apartment,” Sessions explains. “Alex can have a bright, bright future,” he says hopefully.

For her part, Hillary Toucey assumes she will be Eli’s caregiver for the rest of her life—and she hates to think about what will happen when she’s gone. “It’s very scary what the future holds,” she says. “Right now my plan is to be around as long as possible and to save as much money as possible.”

Maybe a little later, when she’s not “struggling just to make ends meet,” she will be able to focus more on long-term planning. But for now, she has more pressing concerns, like getting Eli to therapy, keeping an eye on his schooling, trying not to flunk her classes, and, of course, calling to find out when that PCA might arrive. And so she waits—and tries to keep her head above water.

Article: Michelle Cottle (Via Newsweek)