Although there are no comments on the new blog, I have received dozens of emails responding to the blog and Enews post "Great Expectations" from people around the country.
The responses have a consistent theme, that the message struck a chord for many, addressing feelings that are hard to talk about or acknowledge: - that people are struggling.....that they feel unsupported....that they feel alone and that no one really understands what it means to have a disability or to have a family member with a disability. Nor do people understand the great difficulty of maintaining perseverance and hope in the face of the challenges not only of the disability, but of the often hostile environment we live in.
Four themes came through the beautiful, painful, and hopeful responses I received:
WE ALL NEED TO FIND SUPPORT AND A COMMUNITY OF PEOPLE THAT CAN UNDERSTAND AND EMBRACE PEOPLE WITH DISABILITIES!
WE ALL NEED TO GIVE OURSELVES PERMISSION TO FEEL TIRED, FRUSTRATED, SAD, ANGRY, OVERWHELMED, GUILTY, NOT GUILTY, FIND WAYS TO TAKE BREAKS, BUT MOST IMPORTANTLY, TO SEEK SUPPORT AND VALUE IT.
WE ALL NEED TO FIND WAYS TO SUSTAIN OUR ENERGY, OUR PERSISTANCE, AND OUR WILLINGNESS TO KEEP FIGHTING FOR WHAT WE OR OUR FAMILY MEMBERS NEED!
Monday, December 27, 2010
Saturday, December 4, 2010
“Bobby’s” AD/HD - A Story of Pain, Prejudice and Persistence...
“Bobby’s” AD/HD - A Story of Pain, Prejudice and Persistence...
December 4, 2010
On Friday, a sixteen year old kid, “Bobby,” came to my office with his father because he was having trouble at school. Not at his regular high school.....not at the district’s special ed program....at the private behavioral school that the district had transferred him to because he wasn’t making enough progress at the self-contained “therapeutic” school the district operated. Drug dealer? Gang banger? Violent? Disruptive?
None of the above.
“Bobby” had originally been diagnosed as having a learning disorder. He was also diagnosed as having AD/HD....the school knew about it.....the paperwork documented both. But mysteriously, he had been relabeled as Emotionally Disturbed....
Why? His sin was that he had trouble getting his work done....trouble getting it turned in on time....trouble getting to class when he was supposed to. He had the greatest difficulty in English, which just happened to be one of the areas where he had learning problems. And the worst sin of all- he was late for the detentions he was given because he was doing everything else late. So he was put in a self-contained school filled with students that were aggressive, disruptive, in trouble with the law...and the focus was on behavior control, not on helping to overcome reading problems. He was shutting down in the district’s school because it had no academics and no meaningful vocational support. The district persuaded the “Bobby’s” father to accept the transfer to the private therapeutic school because it had several vocational classes that were hands on classes that didn’t require lots of academic skills. “Bobby” actually thrived in the vocational classes, because they involved experiential learning, but he was bored by the rest of the classes that the school had- there was no academic help and the school was only concerned with compliance. “Bobby” was becoming completely disheartened with school - he wanted to go back to the public high school, but his father realized that would probably only cause the prior problems to reoccur, so they came hoping I could help to find appropriate help for him.
The school never recognized that AD/HD was a disability covered by the special ed laws....never provided services to help “Bobby” to learn organizational skills or to manage his attentional problems. Wasn’t addressing his learning disabilities....or connecting the lines between his total shut down in academic classes and his reading problems. Nor was the school staff recognizing that “Bobby’s” success in shop classes was because he could use his hands, his motor skills and his visual skills, rather than his verbal skills.
“Bobby” is just one of thousands of kids and adults in the US (and all over the world) that continue to suffer because schools, employers, and even families fail to recognize the seriousness of AD/HD and learning disabilities. If it can’t be seen, it can’t be real.
But it is....AD/HD disrupts “Bobby’s” ability to concentrate. It disrupts his ability to plan, to be organized, to keep track of his work. It disrupts his Executive Functioning - the ability to develop and carry out goals in an effective way... It interferes with his ability to listen to the teacher and take notes at the same time. It disrupts his ability to manage his thoughts and his emotions. It has contributed to his becoming socially isolated and withdrawn. It gives him a feeling of failure, that itself interferes with his performance, because he assumes he can’t succeed. Remarkably, “Bobby” still goes to school every day....still wants to go to school....and is even willing to stay in high school a few extra years if it will allow him to learn to function more effectively.
But in the meantime, despite having had no virtually behavioral incidents (his worst “crime” has been swearing at a teacher who was insisting he do work he didn’t know how to do) , no acts of violence, aggression, or disruption, “Bobby” attends a segregated school for kids with severe behavioral problems.....getting no help with his AD/HD, nor with his learning disabilities, nor with the growing emotional problems he is experiencing because school has become a toxic environment for him.
Approximately 5-8% of the school age population have Attention Deficit Hyperactivity Disorder.....some people call it ADD, or Hyperactivity. When I was a kid, it was called Minimal Brain Dysfunction. Originally, it was assumed that children grew out of AD/HD, but it is now understood that AD/HD is a real neurobiological disorder and that the vast majority of children with AD/HD continue to have AD/HD as adults.
AD/HD is a thoroughly researched medical condition. It is a real disability, affecting children and adults. And the impact also disrupts family relationships, with siblings, parents, spouses, children. Yet, 20 years after the Department of Education recognized it as a covered disability, over ten years after it was explicitly added to the IDEA regulations and after hundreds of studies, protection under Section 504 and the Americans with Disabilities Act, and recognition that it is a neurobiological problem with likely genetic predisposition, people with AD/HD still have to convince people that it is real....and even when it is recognized, have to deal with the problem that even most who are willing to acknowledge it don’t really understand what it is or how serious it affects every day life.
As an adult with AD/HD, I can relate completely to “Bobby’s” experience. Each day, as I struggle to remember things that I was supposed to do, or just started, or just put down, or need to finish, I also am aware that my general success hides my internal struggles and causes others to doubt the distress it often causes me.
As a disability lawyer and someone knowledgeable about it, I may be better able to deal with how it affects me and with the reactions of others than many, but everyone with AD/HD struggles with these issues.... And more serious and effective responses from educators, from clinicians and from families, would help every person with AD/HD to more fully realize their potential, to be themselves, to acknowledge and learn ways to use their strengths and to deal with their frustrations, their difficulties, their pain.
Bobby hasn’t given up.....but we shouldn’t give up on him or the thousands like him that are either undiagnosed.....diagnosed, but not being given appropriate treatment or accommodations, or even who are getting help, but are still not understood nor having their underlying emotional struggles recognized....
Bobby has a right to be treated fairly, to be diagnosed accurately, to get the support that he needs, to be educated appropriately. All the Bobby’s have that right, whether male or female If we provide the help sooner, more people with AD/HD will be helped sooner....and will be better able to deal with the debilitating weight of the AD/HD baggage as they move into and through adult life. It is their right....it is the right thing to do....and it is better for everyone. In fact, this is true in relation to all disabilities.....but that is a longer story.
December 4, 2010
On Friday, a sixteen year old kid, “Bobby,” came to my office with his father because he was having trouble at school. Not at his regular high school.....not at the district’s special ed program....at the private behavioral school that the district had transferred him to because he wasn’t making enough progress at the self-contained “therapeutic” school the district operated. Drug dealer? Gang banger? Violent? Disruptive?
None of the above.
“Bobby” had originally been diagnosed as having a learning disorder. He was also diagnosed as having AD/HD....the school knew about it.....the paperwork documented both. But mysteriously, he had been relabeled as Emotionally Disturbed....
Why? His sin was that he had trouble getting his work done....trouble getting it turned in on time....trouble getting to class when he was supposed to. He had the greatest difficulty in English, which just happened to be one of the areas where he had learning problems. And the worst sin of all- he was late for the detentions he was given because he was doing everything else late. So he was put in a self-contained school filled with students that were aggressive, disruptive, in trouble with the law...and the focus was on behavior control, not on helping to overcome reading problems. He was shutting down in the district’s school because it had no academics and no meaningful vocational support. The district persuaded the “Bobby’s” father to accept the transfer to the private therapeutic school because it had several vocational classes that were hands on classes that didn’t require lots of academic skills. “Bobby” actually thrived in the vocational classes, because they involved experiential learning, but he was bored by the rest of the classes that the school had- there was no academic help and the school was only concerned with compliance. “Bobby” was becoming completely disheartened with school - he wanted to go back to the public high school, but his father realized that would probably only cause the prior problems to reoccur, so they came hoping I could help to find appropriate help for him.
The school never recognized that AD/HD was a disability covered by the special ed laws....never provided services to help “Bobby” to learn organizational skills or to manage his attentional problems. Wasn’t addressing his learning disabilities....or connecting the lines between his total shut down in academic classes and his reading problems. Nor was the school staff recognizing that “Bobby’s” success in shop classes was because he could use his hands, his motor skills and his visual skills, rather than his verbal skills.
“Bobby” is just one of thousands of kids and adults in the US (and all over the world) that continue to suffer because schools, employers, and even families fail to recognize the seriousness of AD/HD and learning disabilities. If it can’t be seen, it can’t be real.
But it is....AD/HD disrupts “Bobby’s” ability to concentrate. It disrupts his ability to plan, to be organized, to keep track of his work. It disrupts his Executive Functioning - the ability to develop and carry out goals in an effective way... It interferes with his ability to listen to the teacher and take notes at the same time. It disrupts his ability to manage his thoughts and his emotions. It has contributed to his becoming socially isolated and withdrawn. It gives him a feeling of failure, that itself interferes with his performance, because he assumes he can’t succeed. Remarkably, “Bobby” still goes to school every day....still wants to go to school....and is even willing to stay in high school a few extra years if it will allow him to learn to function more effectively.
But in the meantime, despite having had no virtually behavioral incidents (his worst “crime” has been swearing at a teacher who was insisting he do work he didn’t know how to do) , no acts of violence, aggression, or disruption, “Bobby” attends a segregated school for kids with severe behavioral problems.....getting no help with his AD/HD, nor with his learning disabilities, nor with the growing emotional problems he is experiencing because school has become a toxic environment for him.
Approximately 5-8% of the school age population have Attention Deficit Hyperactivity Disorder.....some people call it ADD, or Hyperactivity. When I was a kid, it was called Minimal Brain Dysfunction. Originally, it was assumed that children grew out of AD/HD, but it is now understood that AD/HD is a real neurobiological disorder and that the vast majority of children with AD/HD continue to have AD/HD as adults.
AD/HD is a thoroughly researched medical condition. It is a real disability, affecting children and adults. And the impact also disrupts family relationships, with siblings, parents, spouses, children. Yet, 20 years after the Department of Education recognized it as a covered disability, over ten years after it was explicitly added to the IDEA regulations and after hundreds of studies, protection under Section 504 and the Americans with Disabilities Act, and recognition that it is a neurobiological problem with likely genetic predisposition, people with AD/HD still have to convince people that it is real....and even when it is recognized, have to deal with the problem that even most who are willing to acknowledge it don’t really understand what it is or how serious it affects every day life.
As an adult with AD/HD, I can relate completely to “Bobby’s” experience. Each day, as I struggle to remember things that I was supposed to do, or just started, or just put down, or need to finish, I also am aware that my general success hides my internal struggles and causes others to doubt the distress it often causes me.
As a disability lawyer and someone knowledgeable about it, I may be better able to deal with how it affects me and with the reactions of others than many, but everyone with AD/HD struggles with these issues.... And more serious and effective responses from educators, from clinicians and from families, would help every person with AD/HD to more fully realize their potential, to be themselves, to acknowledge and learn ways to use their strengths and to deal with their frustrations, their difficulties, their pain.
Bobby hasn’t given up.....but we shouldn’t give up on him or the thousands like him that are either undiagnosed.....diagnosed, but not being given appropriate treatment or accommodations, or even who are getting help, but are still not understood nor having their underlying emotional struggles recognized....
Bobby has a right to be treated fairly, to be diagnosed accurately, to get the support that he needs, to be educated appropriately. All the Bobby’s have that right, whether male or female If we provide the help sooner, more people with AD/HD will be helped sooner....and will be better able to deal with the debilitating weight of the AD/HD baggage as they move into and through adult life. It is their right....it is the right thing to do....and it is better for everyone. In fact, this is true in relation to all disabilities.....but that is a longer story.
Subscribe to:
Posts (Atom)
