After Jayden Naughton lost his speech when he was 2 and was diagnosed with autism, his mother, Megan, made a crucial decision.
When the Avalon woman gave birth to her second son, Duncan, two years ago, she decided he would not be vaccinated, because she believed vaccinations might have had something to do with Jayden's regression.
Duncan is now 2, has never had a vaccination, and also has been diagnosed with autism.
Some might say that this suggests his autism has a genetic cause, but Mrs. Naughton doesn't buy it. In fact, she fears that starting to vaccinate him now could make his symptoms worse. And she's not particularly worried about him getting sick from the diseases the vaccines protect against.
"My grandparents had a lot of these diseases and they're fine," she said last week. "I think these childhood diseases are there for a reason. They're there to build up the immune system."
Whether you agree with her or not, Mrs. Naughton is part of a small but growing subset of parents who either won't vaccinate their children or want to space out their shots. Most of them believe there may be a connection between the vaccines and autism, despite a growing list of scientific studies that contend otherwise.
Even if they aren't worried about autism, some parents are bothered by what they see as an increasing assault on babies' immune systems.
"We do vaccinate, but they do scare me," one mother wrote on the Pittsburghmom.com Web site, which is owned by the Pittsburgh Post-Gazette. "[It's] not necessarily because of autism but just because they get so many of them now and I just wonder if they truly know that they are safe."
While many pediatricians and infectious disease experts feel that doctors should stand their ground in the face of such fears, there is an increasing number of doctors who are willing to accommodate these parents.
Tony Kovatch is one of them. Dr. Kovatch, of the Pediatric Alliance's Arcadia office in McCandless, doesn't agree with avoiding vaccinations altogether, and doesn't know any other pediatricians who do. But he is willing to delay certain vaccinations.
Under the standard schedule promulgated by the federal Centers for Disease Control and Prevention, children can get up to 27 doses of 14 different vaccines before they are 2. They often get up to six shots per visit.
Melinda Wharton, acting director of the immunization safety office at the CDC, said she sees no medical or scientific rationale for spacing out those inoculations.
But Dr. Kovatch responded that "I also don't see any biomedical justification for having to give so many all in one day." He said he believes the schedule was set up "to work into the template of the pediatric well-child visits at 2 months and 4 months and 6 months. But I think the anxiety and concerns of the well-informed public have trumped the convenience on the timing."
One physician who disagrees is Andrew Nowalk, an infectious disease specialist at Children's Hospital of Pittsburgh.
"One of the reasons we are so hot on the vaccination schedule as it is, is that otherwise, you can put your child at risk for some of these diseases, many of which are quite serious. My response to parents who say 'what's the harm in spacing them out' is that many of these diseases are quite devastating."
While they don't see eye to eye on the vaccination schedule, Dr. Kovatch and Dr. Nowalk do agree that some of the diseases the vaccines protect against are more of a threat than others.
Before age 1 children should get the diphtheria-pertussis-tetanus shot and those for haemophilus influenzae B (also known as Hib) and pneumococcal infections, Dr. Kovatch said.
The Hib and pneumococcal vaccines are designed to guard against bacterial meningitis, which used to infect 18,000 children in the United States each year and kill 1,000 of them in the era before the vaccines were available, Dr. Nowalk said.
The pertussis vaccine protects against whooping cough, which has not been eradicated in the United States. Before scientists developed a pertussis vaccine for older children in 2005, there were about 10 to 20 deaths from whooping cough in the country annually, and most were in young children, the CDC's Dr. Wharton said.
For those vaccines, Dr. Kovatch said, he will sometimes suggest to parents who are concerned about the frequency of immunizations that they come into the office more often, and get one vaccine each month rather than three at a time.
He's willing to delay past age 1 the hepatitis B vaccine and the polio vaccine, especially if the family isn't planning overseas travel.
Some doctors follow the schedule advocated by Dr. Bob Sears, a California pediatrician and author of "The Vaccine Book -- Making the Right Decision for your Child."
In his "selective schedule," Dr. Sears never gives more than two vaccinations per visit and delays vaccinations for measles, mumps, rubella, chickenpox and hepatitis A until age 10, and then only if a child's blood tests show a lack of immunity to these diseases.
Spacing out vaccines, he wrote in an e-mail, "allows parents who would otherwise refuse all vaccines to get their babies protected, and helps protect our nation as a whole by raising vaccination rates among worried parents."
Dr. Wharton said she is not a fan of spacing out immunizations, but isn't unalterably opposed.
The problem, she said, is that if too many parents avoid or delay vaccinations, it can allow clusters of childhood diseases to erupt. Outbreaks of measles in the Southwest last year and of haemophilus infections in Minnesota this year were both traced in part to families with unvaccinated children.
Underlying the vaccine delay is the idea that the current schedule puts too much stress on children's immune systems.
But Dr. Wharton offered two arguments against that.
First, she said, children's immune systems are exposed to far more challenges from daily living than they are from all the vaccinations combined.
Second, even though children get far more vaccinations today than they did 40 years ago, they are exposed to far fewer substances in those vaccines that trigger an immune reaction.
The particles in vaccines that build up immunity are called antigens. A 2002 study in the Journal Pediatrics said that the 11 vaccines children were getting in 2000 contained 123 to 126 antigens, while the five that children got in 1960 -- smallpox, diphtheria, tetanus, pertussis and polio -- contained 3,217 antigens.
The major reason for the huge decrease was eliminating the smallpox vaccine from the schedule after that disease was eradicated (it contained 200 antigens), and devising a new pertussis vaccine that dropped the antigen count from 3,000 to about five.
Tricia Baum, of Canonsburg, the mother of a 5-year-old son with autism, said she had not heard that information before -- but it still doesn't change her suspicion that vaccines may have triggered her son's condition.
When she took Nicholas for his 16-month doctor's visit, she said, he was sick and fussy, "and I asked whether he should get his shots, but the doctor checked his ears, and then he said, 'I'm his physician and we're going to go ahead with his vaccinations today and we're going to give him his flu shot as well.' "
She said Nicholas had been developing normally until then, except for a delay in his vocabulary, but not long after that visit, he began to lose what words he had and retreat into himself.
Ms. Baum recently switched to a pediatrician who agreed to measure Nicholas' blood antibody levels before deciding whether to give him a measle-mumps-rubella booster.
Nicholas hasn't had any booster shots yet, she said, and won't as long as his antibody measurements stay high enough.
Elliot Frank, who has a teenage son diagnosed with Asperger's syndrome, is the chairman of local support group ABOARD -- Advisory Board on Autism and Related Disorders.
Although he doesn't believe vaccines cause autism, he knows many families in his organization who do, and he understands the emotions that are driving that idea. "We talk to our parents about how you can't blame yourself for what has happened, but I think it's human nature that you've got to blame something, because you had this image of what your child would grow up to be and at a very young age it's taken away from you, and you've got to blame somebody for life being that unfair."
Dr. Nowalk, who has a child with Down syndrome, understands that as well, but said, he can't abandon his principles as a doctor over the vaccine issue.
"I know they work because I've seen them in my lifetime as a physician protect children against diseases. And they are safe."
Monday, March 2, 2009
Friday, February 27, 2009
What a Hit: Port Resident Has Kids With Autism Coming Up Winners
Port Washingtonian, John Crawley, left his architectural job last year to help his son Patrick who was diagnosed with autism. It was a daunting task, but if anyone knows how to take a project and run with it, it's Crawley. An avid sportsman and former quarterback, Crawley needed to find ways to get Patrick to connect with the outside world better and learn to work with others. Crawley used his own background and instead of designing buildings he designed a sports program for autistic kids.
"It's the most rewarding project I've ever embraced. I can't tell you what it's like to finally see your child connect with others and realize they are part of a team outside of themselves," said Crawley.
Through his effort and determination, the Children's Athletic Enrichment CAE was born. Its mission: allow each child to become what he or she is capable of. The key with this program is that it has been developed and run by educational professionals and certified ABA (applied behavioral analysis) therapists who work with kids with autism on a daily basis. Each child has different needs and therefore, Crawley says the professionals evaluate every child and work with them individually to learn a sport. Each child's progress is documented with charts and graphs and is integrated into the child's existing academic and behavioral program in school.
As with anything in Crawley's hands, this program has taken off and has already won awards for innovation. At least seven major universities in the United States have validated the program. It is on track to become a model for sports programs for kids with autism. Clinical psychologist, Molly Algermissen, PH.D. Columbia University, has worked with Crawley and has recommended the CAE program. "It provides a unique combination of occupational therapy, ABA training and social skills development in a natural environment for maximum therapeutic benefit," said Algermissen.
"The main difference with what we do with kids with autism is that we put them in a team setting outdoors so they are forced to socialize and have partners. Other outdoor programs generally provide individualized athletics such as horseback riding or surfing," said Crawley. "Kids with autism love to be by themselves. This program forces them to be in a group setting, which will make mainstreaming in school easier," said Crawley.
The program is only in its second year and it has met with rounds of success from children, parents and educational professionals. The children have been offered baseball/softball, soccer, swimming and the newest sport, gymnastics just started this year.
Sheila Bluni of Port Washington signed up her 6-year-old son as soon as she heard about the CAE program. Gavin has attended every sport that has been offered.
"I'm so glad this program is right here in our town. Our son, Gavin loves the CAE programs!" said Sheila Bluni of Port Washington. "He has participated in every program the CAE has offered and we are constantly amazed at the professionalism and educational value of the program, not to mention the fun! Gavin is a visual learner. The coaches give him detailed pictures of the sport so he can see exactly what he's supposed to do, how to hold the bat, where to run, etc. I also feel they really understand Gavin and encourage him to meet his full potential. Now Gavin likes to play baseball at home and loves to hit home runs with his siblings!" said Bluni.
Bluni says she will continue to sign up Gavin for more CAE sports-including baseball, swimming and soccer.
The program is offered for boys and girls ages 4 to 8. Crawley is a volunteer, but the educators are all paid and certified and include master's level: adaptive phys ed. teachers, occupational and physical therapists and ABA therapists. Sports uses gross motor skills and so the CAE program is recognized for complementing the therapeutic benefits of the academic programs for these children. Each child takes home an individualized book, which include PECS - picture exchange communication system, a visual explanation of the sport. The book also shows real pictures of the child playing the sport and interacting as a team member. They have color-coded uniforms so they can identify team members.
It is so exciting to me that we have so many kids who want to be in the program said Crawley. Only 18 kids are accepted per program and they have to fall within the autistic spectrum. The cost is $300 per kid per 6-week session. CAE raises money to supplement the fees that go above that. If a child can't afford it, Crawley works with the parents. In fact, Crawley says half of the kids receive some sort of scholarship funding. As a grassroots, not-for-profit organization, CAE has caught the eye of many service organizations, like the Lions Club, who want to help. In 2008, the International Lions Club organization awarded Crawley with the Most Innovative Program Award. Local businesses have also taken an interest in the program. Senator Craig Johnson, Port SEPTA, The Rexford Group, PW Water Pollution Control District, Port Washington Tennis Academy. LaCorte's Family Auto, recently held a fundraiser and donated all the funds directly to the program.
The next program, baseball, starts in April. Sheila Bluni and her son Gavin will be first in line to sign up!
"It's the most rewarding project I've ever embraced. I can't tell you what it's like to finally see your child connect with others and realize they are part of a team outside of themselves," said Crawley.
Through his effort and determination, the Children's Athletic Enrichment CAE was born. Its mission: allow each child to become what he or she is capable of. The key with this program is that it has been developed and run by educational professionals and certified ABA (applied behavioral analysis) therapists who work with kids with autism on a daily basis. Each child has different needs and therefore, Crawley says the professionals evaluate every child and work with them individually to learn a sport. Each child's progress is documented with charts and graphs and is integrated into the child's existing academic and behavioral program in school.
As with anything in Crawley's hands, this program has taken off and has already won awards for innovation. At least seven major universities in the United States have validated the program. It is on track to become a model for sports programs for kids with autism. Clinical psychologist, Molly Algermissen, PH.D. Columbia University, has worked with Crawley and has recommended the CAE program. "It provides a unique combination of occupational therapy, ABA training and social skills development in a natural environment for maximum therapeutic benefit," said Algermissen.
"The main difference with what we do with kids with autism is that we put them in a team setting outdoors so they are forced to socialize and have partners. Other outdoor programs generally provide individualized athletics such as horseback riding or surfing," said Crawley. "Kids with autism love to be by themselves. This program forces them to be in a group setting, which will make mainstreaming in school easier," said Crawley.
The program is only in its second year and it has met with rounds of success from children, parents and educational professionals. The children have been offered baseball/softball, soccer, swimming and the newest sport, gymnastics just started this year.
Sheila Bluni of Port Washington signed up her 6-year-old son as soon as she heard about the CAE program. Gavin has attended every sport that has been offered.
"I'm so glad this program is right here in our town. Our son, Gavin loves the CAE programs!" said Sheila Bluni of Port Washington. "He has participated in every program the CAE has offered and we are constantly amazed at the professionalism and educational value of the program, not to mention the fun! Gavin is a visual learner. The coaches give him detailed pictures of the sport so he can see exactly what he's supposed to do, how to hold the bat, where to run, etc. I also feel they really understand Gavin and encourage him to meet his full potential. Now Gavin likes to play baseball at home and loves to hit home runs with his siblings!" said Bluni.
Bluni says she will continue to sign up Gavin for more CAE sports-including baseball, swimming and soccer.
The program is offered for boys and girls ages 4 to 8. Crawley is a volunteer, but the educators are all paid and certified and include master's level: adaptive phys ed. teachers, occupational and physical therapists and ABA therapists. Sports uses gross motor skills and so the CAE program is recognized for complementing the therapeutic benefits of the academic programs for these children. Each child takes home an individualized book, which include PECS - picture exchange communication system, a visual explanation of the sport. The book also shows real pictures of the child playing the sport and interacting as a team member. They have color-coded uniforms so they can identify team members.
It is so exciting to me that we have so many kids who want to be in the program said Crawley. Only 18 kids are accepted per program and they have to fall within the autistic spectrum. The cost is $300 per kid per 6-week session. CAE raises money to supplement the fees that go above that. If a child can't afford it, Crawley works with the parents. In fact, Crawley says half of the kids receive some sort of scholarship funding. As a grassroots, not-for-profit organization, CAE has caught the eye of many service organizations, like the Lions Club, who want to help. In 2008, the International Lions Club organization awarded Crawley with the Most Innovative Program Award. Local businesses have also taken an interest in the program. Senator Craig Johnson, Port SEPTA, The Rexford Group, PW Water Pollution Control District, Port Washington Tennis Academy. LaCorte's Family Auto, recently held a fundraiser and donated all the funds directly to the program.
The next program, baseball, starts in April. Sheila Bluni and her son Gavin will be first in line to sign up!
Wednesday, February 25, 2009
Couple Lives With Autism, Comfort of Each Other
Love Bloomed After Socializing Was Learned
By THEA TRACHTENBERG and LINDSAY GOLDWERT
Feb. 25, 2009
David Hamrick, 29, and Lindsey Nebeker, 27, look like a typical couple in love, but what's not apparent is how hard they've worked to be together.
A couple finds a connection despite both having autism.
Hamrick and Nebeker live together in a Jackson, Miss., apartment, yet they have separate bedrooms, eat meals apart and spend most of their time focused on their own interests.
This unusual setup is how Hamrick and Nebeker, who are both autistic, make their relationship work.
About 1.5 million people in the United States have autism, with varying degrees of severity. Many people with autism struggle with the most basic social interactions, so finding love may seem like an impossibility.
Hamrick and Nebeker are high-functioning but, since childhood, both have found it difficult to make friends and even harder to keep them.
"All of her socialization had to be learned, usually by hard experience," said Nebeker's father, Gordon Nebeker.
By THEA TRACHTENBERG and LINDSAY GOLDWERT
Feb. 25, 2009
David Hamrick, 29, and Lindsey Nebeker, 27, look like a typical couple in love, but what's not apparent is how hard they've worked to be together.
A couple finds a connection despite both having autism.
Hamrick and Nebeker live together in a Jackson, Miss., apartment, yet they have separate bedrooms, eat meals apart and spend most of their time focused on their own interests.
This unusual setup is how Hamrick and Nebeker, who are both autistic, make their relationship work.
About 1.5 million people in the United States have autism, with varying degrees of severity. Many people with autism struggle with the most basic social interactions, so finding love may seem like an impossibility.
Hamrick and Nebeker are high-functioning but, since childhood, both have found it difficult to make friends and even harder to keep them.
"All of her socialization had to be learned, usually by hard experience," said Nebeker's father, Gordon Nebeker.
Thursday, January 15, 2009
Coping With An Autistic Brother: A Teenager's Take
Each year, approximately one child in every 150 is diagnosed with autism. Eleven-year-old Andrew Skillings is one of those children. He has Asperger's syndrome, a mild form of autism.
For Andrew's older sister Marissa, her brother's diagnosis has affected every aspect of her life from the time he was born. She was almost 5 and shared a room with Andrew. Marissa says she remembers those first few weeks he was home.
"I decided he needed to go back where he came from, because as a baby he never, ever stopped screaming," she says.
Then the Skillings found out Andrew had a mental disability.
Recently, Marissa described what it's like to live with a little brother who has frequent meltdowns — and who she tries to protect.
"I'd kill for him. But I could kill him, too. He talks. Nonstop. Talking and talking," Marissa says. "He'll tell anybody information about an animal, whether they want to hear it or not. People can tell Andrew has a disability because of his hand gestures and the way he moves when he gets nervous.
"He moves his hands back and forth; and he'll walk with his hands down by his sides just shaking his hands; and he likes to crack his knuckles when he's nervous, and he'll keep doing the movement even if they don't crack."
As Marissa says, their sibling relationship is different from "two normal siblings" because of his autism.
"Because socially he needs help, so I have to protect him and be there for him more than a normal big sister would," she says. "He freaks out, like if I won't get out of the bathroom and I tell him to shut up, he'll grab a kitchen knife and come over to the door and open the door and chase me around the house with a knife. I know he'd never touch me with it, but when he's running with a knife pointed towards me and I'm running, if he tripped, then something bad could happen."
Marissa says she stays out with her friends until her curfew so she can avoid dealing with her brother's disability.
"I started staying away from home around 5 or 6," she says. "I'd stay outside or at a friend's as late as I could until my mom called me home. I can sit down and talk with my parents, but a lot of times, it's like Andrew's always trying to explain something about a cheetah or a jaguar or something in the jungle that has no importance on anyone's life. But if I interrupt him, he gets mad and then it turns into a tantrum and my mom gets mad, and I'm just like, 'I don't even want to talk to you guys anymore.' "
Marissa says she has seen kids tease Andrew, and it's not unusual at his age. One day, she says, a boy was throwing rocks at Andrew. Andrew tried to shield himself with cardboard, but a rock flew over the cardboard and hit him in the head. Andrew ran into the house crying, and when Marissa found out what happened, she chased the boy down the street and cornered him.
"I smacked him across the face and he was cornered, and my face I'm sure was beet-red, and I was like, 'Just do it again and I'll punch you right in your mouth,' " Marissa says. "I was mad because no one can beat up my brother except me."
"Sometimes, if I get really frustrated, I just wish I could change everything: Sell him to the zoo and buy new parents," Marissa says. "But then the times when I'm actually appreciating things and I'm not in the moment when I'm steaming mad, I do appreciate what I have."
"I don't think I'd change anything, 'cause this is my life and this is what I'm used to. Andrew wouldn't be like the Andrew I know and love if he was different, because autism is his whole personality."
For Andrew's older sister Marissa, her brother's diagnosis has affected every aspect of her life from the time he was born. She was almost 5 and shared a room with Andrew. Marissa says she remembers those first few weeks he was home.
"I decided he needed to go back where he came from, because as a baby he never, ever stopped screaming," she says.
Then the Skillings found out Andrew had a mental disability.
Recently, Marissa described what it's like to live with a little brother who has frequent meltdowns — and who she tries to protect.
"I'd kill for him. But I could kill him, too. He talks. Nonstop. Talking and talking," Marissa says. "He'll tell anybody information about an animal, whether they want to hear it or not. People can tell Andrew has a disability because of his hand gestures and the way he moves when he gets nervous.
"He moves his hands back and forth; and he'll walk with his hands down by his sides just shaking his hands; and he likes to crack his knuckles when he's nervous, and he'll keep doing the movement even if they don't crack."
As Marissa says, their sibling relationship is different from "two normal siblings" because of his autism.
"Because socially he needs help, so I have to protect him and be there for him more than a normal big sister would," she says. "He freaks out, like if I won't get out of the bathroom and I tell him to shut up, he'll grab a kitchen knife and come over to the door and open the door and chase me around the house with a knife. I know he'd never touch me with it, but when he's running with a knife pointed towards me and I'm running, if he tripped, then something bad could happen."
Marissa says she stays out with her friends until her curfew so she can avoid dealing with her brother's disability.
"I started staying away from home around 5 or 6," she says. "I'd stay outside or at a friend's as late as I could until my mom called me home. I can sit down and talk with my parents, but a lot of times, it's like Andrew's always trying to explain something about a cheetah or a jaguar or something in the jungle that has no importance on anyone's life. But if I interrupt him, he gets mad and then it turns into a tantrum and my mom gets mad, and I'm just like, 'I don't even want to talk to you guys anymore.' "
Marissa says she has seen kids tease Andrew, and it's not unusual at his age. One day, she says, a boy was throwing rocks at Andrew. Andrew tried to shield himself with cardboard, but a rock flew over the cardboard and hit him in the head. Andrew ran into the house crying, and when Marissa found out what happened, she chased the boy down the street and cornered him.
"I smacked him across the face and he was cornered, and my face I'm sure was beet-red, and I was like, 'Just do it again and I'll punch you right in your mouth,' " Marissa says. "I was mad because no one can beat up my brother except me."
"Sometimes, if I get really frustrated, I just wish I could change everything: Sell him to the zoo and buy new parents," Marissa says. "But then the times when I'm actually appreciating things and I'm not in the moment when I'm steaming mad, I do appreciate what I have."
"I don't think I'd change anything, 'cause this is my life and this is what I'm used to. Andrew wouldn't be like the Andrew I know and love if he was different, because autism is his whole personality."
An Autistic Student's Journey To College
Sending your child off to college can be an anxious time for many parents. But for parents of children with a mental illness or learning disability, the transition is especially challenging. One worry is that parents of adult children have no legal standing in their medical care. In Nashville, Tenn., the Diehl family has worked hard to prepare their son for the move from home to college.
Roger's Story
Roger Diehl turned 18 in May. He is a freshman at the University of Wisconsin-Madison. Throughout high school, Roger was an A-student, despite having serious mental health challenges throughout his childhood. He has suffered from clinical depression. He has attention-deficit hyperactivity disorder (ADHD) and Asperger's, a form of autism.
"I'm autistic, so it's a bit tough for me to interact socially," he says.
"Looking people in the eye is not natural to me. I had to learn it. And I also, especially earlier in my childhood, had some pretty bad depressive episodes."
Roger's mother, Sita Diehl, says she first began seeing signs of her son's depression when he was 3.
"I was worried about him, because he was beginning to say that he wanted to kill himself," she says. "He would get very, very angry and frustrated and he would say 'I don't want to be here anymore.'"
Roger says he wasn't actually thinking about ways to commit suicide; he was just thinking it would be a good thing to do. Then, when he turned 6 or 7, his mother remembers him asking specifically about methods of suicide: How long it would take to suffocate if he put a plastic bag over his head; Or, if he jumped out of the car into traffic, would he be killed for sure?
It was at that point that the Diehls got psychiatric help for their son. As a 7-year-old, Roger was put on the anti-depressant Prozac, and he's been on the medication ever since.
"I'm currently on 10mg of Prozac a day and 40 of Ritalin in high-stress situations, because I also have ADHD," Roger says.
Off To College
Roger did not try to hide his mental health problems when he applied for college. He wrote about his illness in his Merit Scholarship application.
"One of the greatest challenges I've overcome has been my autism," he wrote.
His teachers also mentioned his autism in their letters of recommendation. His applications were successful. He was a finalist for a National Merit Scholarship, and he was accepted at several colleges.
When he chose the University of Wisconsin, his family knew that he would need support to attend a college away from home. Sita Diehl is the executive director of Tennessee's National Alliance for Mental Illness, in Nashville. Her work with families there prepared her for Roger's move.
"For many years, I've heard families talk about how their child was at the top of his class, and he was just wonderful, and then he went off to college, and everything fell apart," she says. "And so I was determined that we were going to learn from experience."
"Whether or not it was something that Roger needed, we were going to build a bridge for a gradual launch, rather than just pushing him out of the nest."
One of the reasons the Diehls chose the University of Wisconsin over other colleges was because of their social support network in Madison.
"That's where our extended family lives," Sita Diehl says.
"For the first year, Roger's going to be living with his grandmother, just to make that transition gently. And his favorite cousin lives there, and so he'll have a ready-made social system."
How Parents Can Help
All families face a legal transition when their child turns 18. Roger is now a legal adult. As a result, his parents no longer have the legal right to be involved in his medical care, even though they know he is at risk for depression and suicide.
The family has prepared for this, too.
Sita Diehl has already found a psychiatrist in Madison for Roger; Roger and his family have also consulted a lawyer. The lawyer recommended that Roger needed to give someone financial power of attorney over his affairs. Roger chose to give the power of attorney to his grandmother.
The lawyer also recommended that Roger appoint a power of attorney for both his mental health care and his health care, draft a living will and sign a HIPAA release.
A HIPAA release refers to the "Health Insurance Portability and Accountability Act," a federal law that protects the privacy of an adult's medical information.
By signing a HIPAA release, Roger agreed to let his parents remain involved in his medical care, as they had been when he was a dependent. For parents of adult children with mental illnesses, a HIPAA release is critical.
"I've heard so many parents say that at the age of 18, the wall comes down and it's a real shock. Suddenly, people we've been talking to for years can't talk to us anymore," Sita Diehl says.
"They're very, very reluctant to give information. And you do have to wave this paper in front of them and say, 'This was signed by the patient when he was making good decisions.'"
In addition, Roger is working on an Advanced Directive with his grandmother, documenting what kinds of medical interventions he wants if he becomes incapacitated. And for Roger, who suffers with chronic, severe depression, becoming incapable of making good medical decisions is a real concern.
"He'll work out what he wants, and where he wants to go, and how he wants to be treated, and what medications, and that kind of thing, if he becomes incapacitated. I really don't think Roger will get into that state, but if he did, it would at least be there as a safety net," Sita Diehl says.
Roger feels good about these legal decisions.
"It feels a lot better than not having my family know about what sorts of treatment I'm getting if I'm determined to not have capacity," Roger says.
"I'd rather have them know and be able to make decisions, than the doctors making decisions by themselves."
And Roger says he doesn't feel that his independence is being curtailed by his parents.
"I actually feel that it's adding to my independence, because I feel they'll be more responsive to my wishes than someone I don't know."
Using College Resources
Sita Diehl also recommends one more important step, and that's to check in with the university's Office of Disability.
"Go into the office and say. 'I'm here. This is my disability. I don't need you right now. But at least you know I'm here.'"
"I think the important thing is not to just hope it'll all work out," she says. "But to look at the potential challenges and take steps as far as you can, and do that planning together. And set them up for success as much as possible," Sita Diehl says. Her son agreed.
Roger plans to major in biochemistry. He says he's very excited about the rigorous academic load ahead of him and the sheer wonder of learning new things. He is a remarkable young man, with a family supporting him, and preparing him to go off to college and thrive, while living with the challenges of mental disabilities.
Roger's Story
Roger Diehl turned 18 in May. He is a freshman at the University of Wisconsin-Madison. Throughout high school, Roger was an A-student, despite having serious mental health challenges throughout his childhood. He has suffered from clinical depression. He has attention-deficit hyperactivity disorder (ADHD) and Asperger's, a form of autism.
"I'm autistic, so it's a bit tough for me to interact socially," he says.
"Looking people in the eye is not natural to me. I had to learn it. And I also, especially earlier in my childhood, had some pretty bad depressive episodes."
Roger's mother, Sita Diehl, says she first began seeing signs of her son's depression when he was 3.
"I was worried about him, because he was beginning to say that he wanted to kill himself," she says. "He would get very, very angry and frustrated and he would say 'I don't want to be here anymore.'"
Roger says he wasn't actually thinking about ways to commit suicide; he was just thinking it would be a good thing to do. Then, when he turned 6 or 7, his mother remembers him asking specifically about methods of suicide: How long it would take to suffocate if he put a plastic bag over his head; Or, if he jumped out of the car into traffic, would he be killed for sure?
It was at that point that the Diehls got psychiatric help for their son. As a 7-year-old, Roger was put on the anti-depressant Prozac, and he's been on the medication ever since.
"I'm currently on 10mg of Prozac a day and 40 of Ritalin in high-stress situations, because I also have ADHD," Roger says.
Off To College
Roger did not try to hide his mental health problems when he applied for college. He wrote about his illness in his Merit Scholarship application.
"One of the greatest challenges I've overcome has been my autism," he wrote.
His teachers also mentioned his autism in their letters of recommendation. His applications were successful. He was a finalist for a National Merit Scholarship, and he was accepted at several colleges.
When he chose the University of Wisconsin, his family knew that he would need support to attend a college away from home. Sita Diehl is the executive director of Tennessee's National Alliance for Mental Illness, in Nashville. Her work with families there prepared her for Roger's move.
"For many years, I've heard families talk about how their child was at the top of his class, and he was just wonderful, and then he went off to college, and everything fell apart," she says. "And so I was determined that we were going to learn from experience."
"Whether or not it was something that Roger needed, we were going to build a bridge for a gradual launch, rather than just pushing him out of the nest."
One of the reasons the Diehls chose the University of Wisconsin over other colleges was because of their social support network in Madison.
"That's where our extended family lives," Sita Diehl says.
"For the first year, Roger's going to be living with his grandmother, just to make that transition gently. And his favorite cousin lives there, and so he'll have a ready-made social system."
How Parents Can Help
All families face a legal transition when their child turns 18. Roger is now a legal adult. As a result, his parents no longer have the legal right to be involved in his medical care, even though they know he is at risk for depression and suicide.
The family has prepared for this, too.
Sita Diehl has already found a psychiatrist in Madison for Roger; Roger and his family have also consulted a lawyer. The lawyer recommended that Roger needed to give someone financial power of attorney over his affairs. Roger chose to give the power of attorney to his grandmother.
The lawyer also recommended that Roger appoint a power of attorney for both his mental health care and his health care, draft a living will and sign a HIPAA release.
A HIPAA release refers to the "Health Insurance Portability and Accountability Act," a federal law that protects the privacy of an adult's medical information.
By signing a HIPAA release, Roger agreed to let his parents remain involved in his medical care, as they had been when he was a dependent. For parents of adult children with mental illnesses, a HIPAA release is critical.
"I've heard so many parents say that at the age of 18, the wall comes down and it's a real shock. Suddenly, people we've been talking to for years can't talk to us anymore," Sita Diehl says.
"They're very, very reluctant to give information. And you do have to wave this paper in front of them and say, 'This was signed by the patient when he was making good decisions.'"
In addition, Roger is working on an Advanced Directive with his grandmother, documenting what kinds of medical interventions he wants if he becomes incapacitated. And for Roger, who suffers with chronic, severe depression, becoming incapable of making good medical decisions is a real concern.
"He'll work out what he wants, and where he wants to go, and how he wants to be treated, and what medications, and that kind of thing, if he becomes incapacitated. I really don't think Roger will get into that state, but if he did, it would at least be there as a safety net," Sita Diehl says.
Roger feels good about these legal decisions.
"It feels a lot better than not having my family know about what sorts of treatment I'm getting if I'm determined to not have capacity," Roger says.
"I'd rather have them know and be able to make decisions, than the doctors making decisions by themselves."
And Roger says he doesn't feel that his independence is being curtailed by his parents.
"I actually feel that it's adding to my independence, because I feel they'll be more responsive to my wishes than someone I don't know."
Using College Resources
Sita Diehl also recommends one more important step, and that's to check in with the university's Office of Disability.
"Go into the office and say. 'I'm here. This is my disability. I don't need you right now. But at least you know I'm here.'"
"I think the important thing is not to just hope it'll all work out," she says. "But to look at the potential challenges and take steps as far as you can, and do that planning together. And set them up for success as much as possible," Sita Diehl says. Her son agreed.
Roger plans to major in biochemistry. He says he's very excited about the rigorous academic load ahead of him and the sheer wonder of learning new things. He is a remarkable young man, with a family supporting him, and preparing him to go off to college and thrive, while living with the challenges of mental disabilities.
Subscribe to:
Posts (Atom)
Posts
