The Child Mind BlogBrainstorm
Disney Guts Special-Needs Passes
Sept. 19, 2013 Beth Arky
For the past decade, Disney has played good fairy to special-needs families with its theme parks' Guest Assistance Card program, which provides accommodations for children and teens with physical as well as cognitive, developmental, or behavioral challenges. Those have included autism, ADHD, and sensory processing issues, which make it impossible for children to endure long waits, especially in noisy and crowded places. But this week it has been reported that Disney is ending the GAC program, and substituting a system that special-needs parents see as untenable for their families.
According to the reports, GAC will be replaced next month with something called the Disabled Assistance System. While the current program offers a variety of benefits, including shorter wait times at some of the rides, DAS will require special-needs families to visit kiosks around the parks for passes for each ride, and then wait a period of time commensurate to the wait time on line before going on the ride. (For detailed information on what a GAC card can and cannot do, see Aunesty Janssen's Temporary Tourist blog.)
The changes were incited by reports of wealthy parents hiring disabled tour guides to bypass long lines. While special-needs parents recognize the need to change the system if there is substantial fraud, they protest that the new system won't work for their kids. Today, a petition appeared calling for Disney's top executives to hear the concerns of autism families over the new plan.
Jo Ashline, who wrote a heated blog about the changes for Special Needs Orange County, has two sons; Ian, 10, is neurotypical, while Andrew, 11, is severely autistic with global and cognitive delays and epilepsy.
"Maybe the Disabled Assistance Pass will benefit some people, and for them, I say hooray," she wrote. "But for families like mine, where the special needs of our loved ones are varied and require specific accommodations, this new system will be nothing short of a nightmare. Our son Andrew wouldn't last more than an hour or two and that means I can't see our family ever returning to The Happiest Place on Earth."
The possibility for meltdowns is rife under DAS, says Janssen. Now, to get her 3-year-old autistic, sensory-challenged son out of the house and on the way to Disney, "we have to discuss the plan, like shopping, rides, and the Little Mermaid. But if we veer from the pattern, we have a meltdown." Under the new system, families couldn't create such a routine since they would have to travel between kiosks to obtain passes as shorter wait times become available.
Jennifer Fortwengler, whose 13-year-old son was diagnosed with Asperger's and anxiety, commented on Facebook that she was "disappointed but not surprised" about the changes. GAC, she notes, "makes Disney World doable for us but it's easy for unscrupulous people to abuse. This new system though sounds confusing and complicated and not at all like a workable long term solution."
But Janssen, the mother of six, also sees the potential for even greater fraud. Now, special-needs families must know to go to guest services to get their GAC; there have been times she's seen distressed families who clearly weren't aware of the program. But once the general public realizes they can get special passes simply by going to a kiosk and declaring a family member has a disability, there's nothing to stop people from doing so, or even having family members split up to get passes from different kiosks. If Disney doesn't "see how that can be flagrantly abused, I don't see that they've thought this through," she says.
Janssen says that when it comes to special-needs accommodations, Disney could borrow a page from Universal and Sea World. Universal's red pass allows families to either enter a ride's express lane or receive a return card, depending on the wait. Even better, the theme park provides "Child Swap Rooms," air-conditioned waiting rooms placed at the end of the ride. "A child can see daddy go on the ride, get off, and now it's mommy and my turn," she says. At Sea World, her son can go underground to view the dolphins, getting a break from the sun, heat, and noise. "There's no reprieve at Disney," she says. "You're walking in the hot park."
Fortwengler, whose family has visited a Disney park on a nearly annual basis for years, says she isn't sure they can continue to do so. This would be a shame, given that she feels the parks have benefitted her son: "We have seen some amazing leaps in terms of language, social skills, and even physical abilities at Disney World. I hope Disney is able to work this all out so that all more families can experience the magic we've been able to."
Fortwengler isn't the only mom to feel Disney has helped her son progress. Janssen says she believes her son allowed his grandmother to finally hold him because "he got to practice the hugs with the princesses. He would choose to see Princess Aurora. Slowly, it was OK for us to touch him. Even the doctor can get more touches."
A Massachusetts mother of two boys—a 10-year-old neurotypical son and a 9-year-old diagnosed with autism, anxiety, and ADHD plus sensory issues—says she's "horrified" by the news. "There are very few typical trips or even local activities that we can do as a whole family. We joined the Disney Vacation Club because the GAC made us feel almost like a typical family for one week each year. My husband is calling Disney today to find out how to sell our shares."
She offers a picture of her son with Stitch, lamenting:,"I will probably never see this smile again."
Update, 9/20/13 Disney has released the following statement:
"Disney has long been at the forefront of making our parks accessible to all guests. At this time, we are reviewing a number of considerations and remain committed to providing accommodations for guests with disabilities."View Comments | Add Comment
-Kathleen Prihoda Manager, External Communications Walt Disney World Resort
Resources for Autism Parents in Crisis
Sept. 17, 2013 Beth Arky
An Arizona mother is charged with the murder of her two children, at least one of whom was autistic. A Michigan mother's failed murder-suicide has led to charges of attempted murder of her autistic daughter. These and other tragic cases make it clear to us that both parents and autistics are in need of supports when they are in crisis.
It's important for a parent who feels she can't handle a dangerous situation with a child—or who is so distraught that she is thinking of harming her children—to know that there are other options for getting help beyond involving the police with a 911 call. These are resources you might want to investigate when you are not in a crisis situation; sometimes, just knowing you're prepared with a back-up plan is enough to make you feel in control during difficult situations
Mobile crisis units
A mobile crisis team is made up of mental health professionals such as psychiatrists, psychologists, nurses, and social workers who can come to the home to provide a range of services to anyone who is experiencing, or is at risk of, a psychological crisis. What can they do? Emergency mental health assessment, crisis intervention, supportive counseling, information and referrals, links to community-based mental health services for ongoing treatment, and follow-up. Run by voluntary agencies and municipal hospitals, the teams may arrange transportation to an emergency room if it's deemed necessary. They will also call the police if the individual in crisis will not go to the hospital willingly and meets specified legal criteria. New York City residents can learn more about this program here; crisis units in other areas may be found via a search engine.
Medicaid waiver providers
If children and teens are covered under a Medicaid waiver, a parent in crisis may check with her service coordinator to see if temporary emergency shelter is available for the children until she can get the support she needs and the home stabilizes.
Private ambulance companies
If parents feel the crisis merits calling 911 but don't believe the police need to be involved, there is another option: a private ambulance company. This also allows parents to specify the emergency room they wish to go to, which is not the case when EMS is called. Parents may want to ask treating clinicians and other parents which pediatric mental health ER in their area has the best record in dealing with crises situations.
Autistic advocate Paula Durbin-Westby has also compiled Emergency Information: Autism Resources for both parents who feel they may harm their child and autistics who feel endangered. It includes information on such organizations as the National Domestic Violence Hotline, the National Suicide Prevention Lifeline, and the Autism Women's Network.View Comments | Add Comment
Max Finds New Passion in 'Parenthood' Premiere
Sept. 13, 2013 Beth Arky
The wait is almost over, Parenthood fans. When season five premieres September 26, Kristina is cancer-free and, as this clip shows, Max is brimming with familiar spectrum-y qualities, from his precise time calculations to a singular new "hobby"/passion/obsession—photography—taking over his life (and the lives of all around him). Reaction to news of the return of Hank, Sarah's former love interest, has been decidedly mixed. Based on this episode—in which he tells the boy that people "may be a pain in the ass," but he needs to shoot 10,000 pictures of them to make something of himself as a photographer—he's going to have to win us over. Still, we're excited to see Max excited.View Comments | Add Comment
Celebs Share Their Bullying Stories on Video
Sept. 10, 2013 Beth Arky
What do Taylor Swift, Justin Timberlake, and Kate Winslet have in common? All talented, successful bold-faced names? True. It's also true that they were all were bullied as kids and teens, and all are featured in You Are Not Alone, a powerful anti-bullying video made to be used during school assemblies.
The video features photos of the stars during their awkward years and then again, as we recognize them, along with their memories of being tormented as far back as grade school.
"If you didn't play football, you were a sissy," Timberlake is quoted as saying. "I got slurs all the time because I was into music and art." Rihanna recalls that while having lighter skin wasn't a problem it home, the harassment over it "continued to my very last day of elementary school." Eminem, a shaggy-haired redhead in his class photo, shares, "I was beat up in the bathrooms, in the hallways, shoved in the lockers—for the most part for being the new kid."
The photo of a round-faced girl is accompanied by the caption, "I was bullied for being chubby. Girls told me nobody would ever fancy me." This from the actress who grew up to be wooed by Leonardo DiCaprio in Titanic. Even Kate Middleton wasn't spared—when she'd sit down at the lunch table, the other kids would get up, she has said.
The video also highlights how some countered the bullying. When Michael Phelps was picked on for his "sticky-out ears," being gangly, shaving his legs and wearing a Speedo, the adversity "made him stronger and work harder." And as for the blonde, blue-eyed girl in cornrows who would grow up to be pop sensation Swift? "If I hadn't come home from school miserable every day, maybe I wouldn't have been so motivated to write songs."
Hall shows the video in schools. "I've had girls come up and thank me for showing them the pictures of Rihanna and Taylor Swift and Megan Fox and Princess Kate," she says. "It helps them to feel a little better about themselves to see the celebs in their awkward stages and to know that 'totally cool' people were bullied, too."
In other words, they are not alone. And it's more than possible to beat the bullies.View Comments | Add Comment
What Drives Teenagers to Suicide?
Sept. 9, 2013 Caroline Miller
Months after a brutally bullied gay teenager named Jadin Bell hanged himself in a small town in eastern Oregon, a Portland novelist named Pauls Toutonghi was moved to investigate. The father of 3-year-old twins, Toutonghi found that he couldn't stop wondering what Jadin had been feeling and how his parents were dealing with his death.
He was moved by the sheer number of young people who commit suicide—4,600 of them a year, according to the CDC—but also by the fact that he, too, had tried to commit suicide as a teenager. Toutonghi isn't gay, but he was teased in school for being overweight. That, coupled with stress at home, contributed to what he calls "a toxic cocktail of self-loathing."
Toutonghi writes in Salon that he doesn't remember climbing out the window of his bedroom with the intention to jump, but he does remember vividly his inability to manage his emotional anguish, though the reasons for it, in retrospect, seem insignificant. "I could not calm it, could not control it, could not find relief," he writes. While he panicked at the last minute and changed his mind about jumping, he slipped and fell the 20 feet to the concrete driveway, and was lucky to be alive. In the emergency room, he was able to cover his suicidal intentions with a flimsy story, and he believes no one in his family was the wiser.
I recommend the story for the details about Jadin's life and death, and his parents' efforts to come to terms with their loss, but also for Toutonghi's awareness of how vulnerable teenagers are to emotional pain, despite loving and supportive parents. Jadin's father, Joe Bell, accepted his son's sexuality and admired him for coming out. "What Jadin did took enormous courage," he told Toutonghi. "But it destroyed him."
And Joe Bell, too, was no stranger to the suicidal feelings of teenagers-he tells Toutonghi of his own close brush at 17. "In the middle of the night, he'd taken his dad's .22 caliber pistol to his bedroom," Toutonghi writes. "He'd held the gun in his hands, willing himself to raise it to his temple and pull the trigger. He'd cocked the hammer. But then his determination had faltered. He'd slipped the gun beneath his pillow—and gone to sleep."
The piece is moving on all counts—not only about the teenager who died, and the thousands like him who take their own lives ever year, but about those who come painfully, frighteningly close.View Comments | Add Comment
A Sandy Hook Mother Thanks Teachers
Sept. 9, 2013 Beth Arky
With New York City students returning to public school today, we can't think of a timelier, or more touching, tribute to those who work with our children than this letter by Nelba Marquez-Greene, one of the parents who lost a child in the Sandy Hook Elementary School rampage. Marquez-Greene's 6-year-old daughter, Ana Grace, died on December 14, 2012, in the mass shooting; her son survived.
In the letter that appears in Education Week, Marquez-Greene writes eloquently of her admiration for the courage, faith, and love with which teachers and other school employees returned to Sandy Hook after the shooting. "When I asked my son's teacher why she returned," she writes, "she responded, 'Because they are my kids. And my students need me now more than ever.' "
Marquez-Greene notes that it's courageous teachers who support children like her son, who have "lived through traumas no child should have to," as well as "students who are left out and overlooked, like the isolated young man who killed my daughter."
She would like to see teachers get more credit for the work they do. "Real heroes don't wear capes," she writes. "They work in America's schools."
She encourages teachers to "have faith that your hard work is having a profound impact on your students." At a time when teachers are often demoralized, we hope educators and parents alike will take in this mother's message to heart.
Marquez-Greene writes that sending their son back to the school where their daughter died was excruciating: "We sent him because we didn't want him to be afraid. We sent him because we wanted him to understand that while our lives would never be the same, our lives still needed to move forward."
His teacher sent daily updates on their son's progress, from his behavior to what he'd eaten for lunch. "And four months later, when my son finally smiled one day after school, I asked him about it," Marquez-Greene writes. "His response? 'Mom. My teacher is so funny. I had an epic day.'"
We wish all students, teachers, and parents equally epic days.View Comments | Add Comment
Study Finds Yelling at Teens Makes Behavior Worse
Sept. 6, 2013 Caroline Miller
A new study out this week confirms what we've known—but haven't always believed—that yelling at misbehaving kids isn't an effective way to reduce problem behavior. Instead, it makes it worse.
Researchers at the Universities of Pittsburgh and Michigan followed almost 1,000 families with 13- or 14-year-old children, using parent and child surveys to rate the parents' use of harsh verbal language and the kids' behavior, moods and feelings about their parents over the following year. They found that shouting at kids actually increases disruptive or oppositional behavior, and the kids who were on the receiving end of the harshest verbal discipline were more likely to develop symptoms of depression.
Adolescence is a very sensitive period when kids are forming identities, one of the co-authors of the study tells the Wall Street Journal. "When you yell, it hurts their self image. It makes them feel they are not capable, that they are worthless and are useless."
Of course, notes NPR, the link between parental behavior and the behavior of their offspring is complex. As Dr. Alan Kazdin, the director of the Yale Parenting center, explains: "Some adults are genetically more inclined to screaming and harsh behavior, and it's likely that their children will be, too, totally aside from how they're treated."
For a more detailed look at the negative effect of blowing up at kids, check out Beth Arky's story "Stop Yelling!" We'll give the last word to Dr. Melanie Fernandez of the Child Mind Institute, who spells out some more effective alternatives: "We know that modeling has a profound influence on behavior, whether we're a child or adult. When parents practice healthy self-regulation, it teaches kids how to self-regulate better."View Comments | Add Comment
Living Up to the Potential of Dr. King's Dream
Aug. 28, 2013 Harry Kimball
Today is the 50th anniversary of the 1963 March on Washington and Martin Luther King's "I Have a Dream" speech. I was going to write that we are "commemorating" it today, but that word rings wrong. We commemorate what we feel we should remember. But when I hear that speech, it is fiercely present. In my mind the legacies of Dr. King and all the fellow travelers of the civil rights movement require a proactive re-engagement—because the story is not over. Not by a long shot.
In one major way this is clear. Race relations in this country have come far since the dark days of...well, most of our history. Black and white children are free to hold hands, as Dr. King hoped. A black man holds the highest office in the land. However, we know that the journey is not over. A cursory look at the news will tell you as much. I don't know if there will ever be a "post-racial" America, but we certainly aren't there yet.
But even as we continue to struggle with the lines of color that still divide us, let's not forget that the message of Dr. King and the civil rights movement was not only about racial equality. It was about equality, period. It was about respect for our fellow citizens and our fellow human beings. It was, as we all know so well, about a dream of a country where children "will not be judged by the color of their skin, but by the content of their character."
I propose that that statement applies beyond differences of skin color. It applies to differences of opportunity, of gender and sexuality, of opinion. And it applies to the different inherent challenges our children may face because of illness, of the body and of the mind. That phrase means to me that the potential that lies within every child is the most important thing, and that impediments to the nurturing of that potential are the enemies of a just and vibrant society. And I think it is important to remember that even when Dr. King made that speech fifty years ago, there were laws on the books guaranteeing equality to black Americans, even as now there are laws on the books guaranteeing parity to those who struggle with mental illness. Law is not enough. The heart of this nation also needs to change.
Listening to the radio this morning I was reminded of the link between Dr. King's speech and Langston Hughes famous 1951 poem "Harlem." "What happens to a dream deferred?" Hughes wonders. "Does it dry up like a raisin in the sun?" Or, he ends pointedly, "does it explode?" Hughes was hinting at the possibilities of stymied potential-withering, on the one hand, and rage, on the other. We see these same possibilities in our underserved, forgotten children. But, like all of us, they have a dream. They just need some help moving towards it. I am thankful today that Martin Luther King and all the marchers from 1963 are still showing us the path.View Comments | Add Comment
Getting Kids to Put Down the Phone
Aug. 20, 2013 Rachel Ehmke
Dwight Garner, literary critic for the Times, took an unusually personal assignment lately—trying to figure out how to wrest his children away from the various technologies that they seem increasingly addicted to. This is a perennial issue for Garner and his wife, who apparently try to introduce ambitious new rules restricting the children's technology usage at the beginning of every school year, only to watch these rules routinely fizzle out by the second week of school.
Like many frustrated parents, Garner turned to books written on the subject, hoping they might have the answer he's been looking for. The subsequent review he produced was as amusing and depressing as you might expect it to be. He didn't get any answers, but he did get some laughs. One of the books discusses "tweeting mindfully," for example.
The truth of the matter is that Garner is pretty aware of what he needs to do to limit his kids' technology usage, starting with not abruptly issuing mandates that he's unprepared to enforce. But his dilemma is a common one for many parents. We're in a new era of technology, and parents don't want their kids to get left behind. Garner writes, "I like that they are comfortable and alert in the wired world, able to fish in it like young bears in a salmon stream." (Really the last thing parents should be worried about is wired literacy, since kids do a pretty good job taking care of that themselves, even without unfettered access.)
Like Garner, many parents also feel uncomfortable setting boundaries with children, even though he knows limits are important. This is true especially with kids, but it's also true for ourselves. In part Garner's essay is also about his own immoderate technology usage. "Without my iPhone in my palm, I feel bereft," he writes. "I'm fairly obsessive. I must change my life a bit." But it doesn't really sound like he wants to.
One commenter noted that his essay was reminiscent of one that Adam Gopnik wrote for The New Yorker about his daughter's imaginary friend Charlie Ravioli, who was always too busy to play with her. She'd call and get Ravioli's machine, or he'd answer and say he's too busy working to play. He frequently canceled their imaginary lunch dates but sometimes they'd manage to grab coffee. Eventually Ravioli acquired an assistant, named Laurie, who screened his calls for him. It was obvious that his daughter was mirroring the glamorously ultra-busy lives of the adults around her, and having some fun while doing it, but it was disturbing to witness.
That essay was written in 2002, but the point that it raised is only getting more applicable. Until we start modeling the values that we want to see in our own children, we shouldn't be surprised if, like so many Charlie Raviolis, they don't have any time for the things that happen outside their phones.View Comments | Add Comment
A Sweet, Sensitive Film About Kids in Foster Care
Aug. 20, 2013 Dr. Harold S. Koplewicz
I recently attended a screening of Short Term 12, a wonderful movie about a foster care facility for at-risk teenagers in Los Angeles, told through the eyes of a twentysomething mental health director, Grace. It was inspired by the real experience of the writer-director, Destin Daniel Cretton, who worked in the foster-care system, and it shows in its insight into the struggles of both the residents and the staff.
It's an affectionate, thoughtful look at the challenges of being these wounded, complicated kids, as well as the challenges of helping them, of reading their behavior and responding effectively. It's an emotional film but not a sad one, because it's really about resilience, and the healing power of being open about painful experiences and the feelings they generate.
The kids who come to live at Short Term 12 have been abused or neglected, but they're not sensationalized or stereotyped. Right in the opening sequence the tone is set when a young resident comes screaming out the front door, heading for the gate, beyond which the staff is legally not allowed to touch him. Grace and her coworker (and live-in boyfriend) Mason swiftly and gracefully intersect the boy, who's shouting obscenities but also clearly relieved to be caught, and ready to "de-escalate," as Mason puts it, inviting him to come back on the unit and take a nap. They react with insight born of seeing plenty of kids act out, and not being either impressed or frightened by the behavior.
The plot of Short Term 12 is as much about Grace and Mason as it is about the kids. There's a marvelous scene in which we discover that Mason was raised by foster parents, and he has a chance to toast them, with the other children they took in. "You took in a punk kid and taught me how to love," Mason tells them, and we have seen the power of their teaching in Mason's way with both the kids and Grace.
Grace struggles with her own past, and the powerful connection she makes with a new resident named Jayden, who has serious problems with her father, helps her begin to come to terms with very difficult feelings. A good deal of Short Term 12 is a sensitive depiction of the ways in which we acknowledge and express things that have hurt us—sometimes in very small increments—and how expressing them allows us to live more fully, and let other people into our lives.
None of the residents of the home called Short Term 12 are "bad" kids or "good" kids—they're kids with vulnerabilities and weaknesses, who by acknowledging them are able to achieve some degree of transcendence. We don't know how many of them have psychiatric issues and how many are just damaged by abusive or neglectful environments—and of course we do know that kids with psychiatric issues often attract abuse in very troubled families.
The backdrop to the film is the system, which sends kids to Short Term 12, highlighted when newbie staffer Nate asks on his first day,"How long do they stay here?" Grace unflinchingly responds, "Less than a year, but we have a few that have been here a little over three—we just keep them until the county figures out where they are going to go next."
In my years as a child and adolescent psychiatrist I have seen many kids fall through the cracks in an overwhelmed mental health care system. But what kids get at Short Term 12 is really a substitute family; an ad hoc family that shows how much can be achieved, despite daunting odds, with mutual trust, open-mindedness, and patience.
Short Term 12 arrives in theater August 23rd in New York and LA. For more on the film visit ShortTerm12.comView Comments | Add Comment