Monday, December 27, 2010

Keeping Hope Alive!

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:




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 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 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.

Saturday, November 27, 2010

Great Expectations, Difficult Transitions

Great Expectations, Hard Transitions November 26, 2010

Having kids was the most exciting event in my life. I had thought of having kids since I was a kid. I wanted lots. As I grew older, the wish for children was always in my universe, like the north star......not always visible, but always there, a point in the galaxy to organize life by. As I reached adulthood, the desire remained. I had a familiar nest of hopes and expectations - the joys of birth, the delight of holding and nurturing an infant, the building of a family, the chance to teach, share, play, lead, comfort. As the oldest of four brothers, I had some experience with helping younger ones. I loved the sense of innocence, the spontaneity, the curiosity.....I didn’t even mind changing diapers. I didn’t need for my kids to grow and go to Harvard, win the Nobel Prize, or cure cancer. In fact, having suffered some excess expectations as a child, I was very clear that I simply wanted for them to grow up to lead a good life, to be the best they could be and to find happiness.

I have two wonderful is in college and doing great things that one does in college. He isn’t entirely sure what he will do when he graduates, but he has many options and many talents. For him the biggest challenge may be deciding where to put his energy and taking the plunge to commit to that choice, at least for a while.

My other, older son, alternates his time, primarily living with me at the moment, but spending part of his time with his mother. He is happy right now, perhaps happier than he has been in years, having just started a new transition program, begun to make some new friends, and perhaps, having a real relationship with a young woman that he met through the program.

Since he was two, doctors have given him a succession of labels, some somewhat less ominous, ,some more serious, but all significant. Whether ADHD or LD or NLD or Asperger’s, or anxiety, or OCD, or Cerebral Palsy or Epilepsy, I have learned over the years that in the disability game, there is no winner on the severity scale. All have an impact that can vary enormously from person to person. All can be helped in some ways through various interventions, but all can and generally do have a huge impact, on the child and on their family.

Part of living with disability is recognizing the inevitable tension of finding one’s place in the world in a world that is not very welcoming. How to be “regular” given what ever differences the child experiences? How to participate and feel and be included when the people around are not always welcoming, or may be welcoming, but unsure of how to welcome, or may be sure of how to be welcoming, but not aware of who this person is and what they want and need. Often, life with disability is also complicated because the child’s needs and abilities are constantly changing, growing, becoming more challenging. Some things become easier, some harder. Some things are out grown or treated successfully, others grow worse with time or become harder because the gap between the child’s abilities and others is growing.

And sometimes, the tension is made worse by the inability of the army of doctors, therapists, evaluators, educators, case managers, and well meaning family and friends lead to a witch’s brew of different diagnoses, prognoses, recommendations, and expectations. Condition x requires y, but condition A requires B. This one says x, but that one say A. And if both x and A are present, others say that Z should be done.....
Worst of all, some say - he or she has “reached their potential.” Now it is time to accept that they have gone as far as possible and to provide for them....and if parents don’t accept this, we are in denial.

My son has lived this. We have lived these tensions with him. What is his potential? (Impossible to know unless we keep trying) Where can he function best? (in a program or at home....we are mortal, but programs and staff come and go and are often not all that they appear to be on paper) How can he learn best? (I wish I could figure that out, but I know that giving up on learning will be the only option that guarantees failure). Can he keep learning (yes, absolutely...whenever I doubt it, he surprises me with a big leap forward.) There is so much pressure to accept a accept the lowest level of accept the easiest solution.

The state of the world makes this even harder. An economic crisis. Reduced funding for programs....economic uncertainty for all of us. For kids with disabilities and their families, all of these things are even more devastating than for the rest of the world, because the demands are already greater. And each transition, from one school to another, from one program to another, from one developmental stage to another, brings new challenges, new demands, new surprises.

And for the person with the disability, the question remains: “What is my future?” They and their family must find ways to answer this question at each stage of transition. The answer may not be the ultimate answer. Indeed, any realistic answer needs to include the possibility, no the inevitability, that the path will change, perhaps often. But we need to find a path, a sense of future, a sense of belonging, a sense of community. Ultimately, this is far more important than a particular career, or job, or concrete skills. Ultimately, the most important challenge is to help the individual find a way to be as independent as possible, but as connected and engaged as possible - to a path, to a group of people, to a life that provides a sense of self, of worth, of relationship, of belonging, of happiness.

As parents, we must evolve - I am still evolving, but as I do so, I increasingly recognize that some of the intangibles of life are more important than those that we typically use as measures of success. For both of my sons, I wish for them the most success and independence and happiness possible. They will be on different paths, but many of the things that will be the true measures of happiness for each of them will be the same - doing what they want to do, with people they care about and that care about them, feeling that they are doing some they value and is valued by others, giving, receiving, and having the chance for love of friends and family.

As I evolve (and struggle) with some of these issues, I also struggle with my desire to promote my son’s opportunities for growth without being unrealistic or creating false expectations. But I always come back to the lesson he constantly teaches me, that setting limits creates limits and allowing for unknown or unexpected possibilities and maintaining hope and support that we always can grow assures that growth will keep happening.