It follows a mom through her day with a little boy who appears to have some kind of developmental delay. The voice-over tells us he was in the neonatal intensive care unit for over 100 days. Now he looks somewhere between 3 and 4 years old. She makes him a peanut butter sandwich and laughs when he spills the milk. She plays with him and keeps a watchful eye while she goes about daily chores. She washes his hair as he kicks and squirms. She struggles to brush his teeth. Then there’s story time and a kiss good night. All the while, she is the epitome of patience and all smiles.

Then the ad gets real. Having tucked her little boy in, having said she wouldn’t trade him for any other kid, she has a moment alone on the front porch. In that moment we see “the look.”

Anyone who has been there knows what it means. To see it cross another’s face is to feel it in the gut. It’s the shadow that passes through in a moment of exhaustion. It’s the small piece inside that does wish, if only for a moment, that she did have another kid; one who didn’t need her every single minute of every single day.

Then she does what loving parents do: She takes a breath, remembers the blessings of being a mom to this special child, and goes in to get ready for another day and another round of constant care.

Moms, and dads with kids who are disabled or chronically ill know that look and the feelings that create it. They also know the moment that comes next: the moment of renewed commitment that is born of love and hope and determination. Raising a disabled or chronically ill child is not for sissies. If parents weren’t strong before this special child became theirs, they’ve developed strength they never knew they had in them.

Mother’s Day is almost here. Let’s all take a moment to appreciate the mothers who do everything every other mom does plus a whole lot more.

They are the moms for whom the first months of sleeplessness extend into years. They are the moms who become experts on their child’s diagnosis and therapies and education plans. They have learned to manage endless appointments with medical specialists and endless meetings with educational experts. They have learned an awesome vocabulary of medical terminology, education jargon and insurance codes.

Complicated schedules and routines and star charts have become second nature. Those who have kids with special diets know how to spot dangerous ingredients in a cupcake from a hundred yards away. Those with behaviorally challenging kids can handle a tantrum while folding laundry and planning dinner. Many even find the energy to organize support groups, get involved with agencies that offer activities for their kids, and advocate for other families as well as their own.

Contrary to conventional wisdom, most of their marriages are strong. Sure, the demands on these couples are many and constant. But most do better than just cope. They succeed as partners and as parents and develop positive feelings and values about raising a child who is challenged and challenging. The birth or adoption of a child with special needs has taken their lives in unexpected directions that aren’t always pleasant but are nonetheless meaningful and important. When asked, most will say that parenting their child has made them better people.

That strength and love and commitment extends to their nondisabled kids as well. If they thought about it, they could take enormous pride in their success in raising compassionate, competent kids whose experience with their brother or sister with a difference has made them sensitive to the needs of others. Most moms don’t think about it. They are just doing what feels right and good for their families.

For mothers of children with special needs, Mother’s Day rarely means a dinner out or diamonds. A qualified babysitter is hard to find. Money is more likely to go to bills than jewelry. Often the child who made her a mother can’t understand a holiday, can’t carry a tray to give her breakfast in bed and won’t be bringing her a bunch of violets or a card made all by himself. These moms celebrate their day with their different child in a different way.

And celebrate they do. They find joy in the knowledge that they are nurturing a child’s spirit as well as her health. They take satisfaction in knowing that each accomplishment, however small it may look to others, is a major victory. Each of her child’s achievements is at least partly her own. She knows the value of her efforts and the importance of keeping a positive attitude and counting the blessings of every day.

Still, it never hurts to hear all this acknowledged. Loving words of appreciation from a partner, spouse, friend or extended family members do mean a lot. If you know such a mom, reach out this Mother’s Day and let her know that you see her for the amazing person she is. A phone call or visit or card may seem like a small thing but for a mom in the special needs trenches, it can really make her day. The support of others added to her own commitment is what makes it possible for her to take that breath and get ready for another day.

Occupational therapy often is misunderstood in this process. According to the American Occupational Therapy Association, the primary goal of occupational therapy is to support and enable each person’s “health and participation in life through engagement in occupation.”

“Occupation” does not solely mean work. Some examples of occupations include time spent on personal hygiene, preparing a meal, managing finances, painting a picture, attending a community leisure course, and socializing with others. Occupational therapists enhance people’s ability to live meaningful and satisfying lives.

The purpose of occupational therapy can best be described by the profession’s motto, “Occupational therapy: living life to its fullest.” All individuals have a right to live life to its fullest. An occupational therapist can help people consider not only their needs, strengths, abilities, and interests, but also their physical, social, and cultural environment.

Origins of Occupational Therapy

While many commonly think of occupational therapy as physical rehabilitation after injury or illness, it actually has roots in mental health.

Occupational therapy’s emergence can be found as far back as eighteenth-century Europe. At a time when mentally ill people were treated like prisoners, a “moral treatment movement” began to evolve. While the previous treatment model was associated with punishment, brutality and idleness, the moral treatment movement sought to encourage kindness and the therapeutic value of engagement in purposeful activities.

The first occupational therapy treatment model, called Habit Training, began at Johns Hopkins in the early twentieth century. This approach proposed that in mentally ill people, occupational activities such as work, rest and play had become unbalanced. Early occupational therapists introduced therapeutic occupations such as weaving, art, and bookbinding. These goal-directed activities were used to help individuals learn new skills to be productive, and derive therapeutic benefits of a balanced daily schedule.

The occupational therapy profession grew as wounded soldiers returned from World War II, and then surged again in the 1970s with the medical field’s increase in specialized skills and knowledge.

Occupational therapists always have believed in treating the whole person, whether the primary problem relates to physical or mental health. They practice in diverse settings, including hospitals, outpatient clinics, skilled nursing facilities, intermediate care facilities, home health, neonatal intensive care units, community programs and the workplace. Those who work in mental health can do so in residential hospitals, community-based mental health settings and outpatient private practice clinics.

Assessments and Treatments

When working with someone with a mental health condition, occupational therapists employ a variety of assessments. Once the necessary information has been obtained, the therapist creates a personalized occupational profile. This profile is used for goal-setting and treatment planning.

Common areas of assessment include:

• Activities of daily living (e.g., bathing, dressing, eating)
• Instrumental activities of daily living (e.g., driving, money management, shopping)
• Education
• Work (paid and volunteer)
• Play
• Leisure
• Social participation
• Motor processing skills
• Mental and cognitive processing skills
• Communication and interaction skills
• Habits, roles and routines
• Performance contexts (e.g., cultural, physical, spiritual)
• Activity demands
• Client factors (e.g., difficulties due to body structures or functions)
• Occupational self-assessment

For example, an occupational therapist may assess a client with schizophrenia who is living in a residential hospital in order to help to determine the best placement in the community. The assessment may include standardized evaluation tools, individual interview, and observation to determine ability to function and live alone safely, and identify important roles and occupations. This information is then used to determine the skills, supports, and environmental modifications the person may need to live as independently as possible.

Occupational therapy can be vitally important in the overall mental health treatment process. Following are some common interventions:

• Life skills training
• Cognitive rehabilitation
• Supported employment
• Supported education
• Social and interpersonal skills training
• Life balance intervention
• Modalities such as biofeedback and mindfulness-enhanced therapy

Part of Collaborative Process

As noted in the beginning of this article, occupational therapists collaborate with many other professionals to help individuals on their road to recovery. While the role of the occupational therapist may overlap with other team members, the occupational therapist provides a unique theoretical and clinical contribution to the recovery and treatment team; thus, occupational therapy should be considered a vital part of a comprehensive and integrated treatment program.

“Oh, she sees funny things,” said the daughter. “She has Charles Bonnet Syndrome.”

I was in an intake interview with the pair before placing a caregiver in the home of this delightful 95-year-old woman with macular degeneration. We had been talking for about 40 minutes before she mentioned her “visitors.” It was already clear that she was fully oriented, sound-minded, intelligent, witty, and sharp. “When this first started, I thought I had gone crazy, but I know now I haven’t,” she said. “Now I just sit back and watch the show. Having Charles Bonnet Syndrome is like seeing a little movie, though it is quite strange.”

Hallucinations of vividly clear, complex patterns, people, faces, buildings, cartoons, children and animals – often in amazing detail – would be understandably disturbing and frightening. But this woman had learned that this trick of the mind happens to some people who have had vision loss. Hers was the healthiest reaction to Charles Bonnet Syndrome (CBS) I had ever seen.

CBS – named for the Swiss naturalist who first described it in 1760 (Bellows) – is little discussed and not widely known. Because I work with many elderly people, I know it because there is so much macular degeneration among the aged. It is the leading cause of blindness in those over 60 (National Institutes of Health and the National Library of Medicine). It is not thought to be rare, though it is likely vastly underreported: those who experience it are terribly frightened they have become crazy or demented, so they don’t dare mention their visions. (Menon, Rahman, Menon, and Dutton, 2003). However, it may occur in as many as one-third of visually impaired people (Light House International).

Such silence and fear are not entirely unreasonable. CBS can be misdiagnosed and often goes unrecognized by medical professionals (Menon, G., Rahman, I., Menon, S., and Dutton, G., 2003). Families often panic. Patients reporting such symptoms should be checked medically against the possibility of other causes, such as neurological diseases or medication side effects. CBS also can occur where damage or disease affects the area of the visual cortex of the brain. Those who experience it without known visual impairment should be checked for other conditions. (Royal National Institute of Blind People).

15 Tips for Managing Charles Bonnet Syndrome

There is no cure for Charles Bonnet Syndrome, so patients need to learn to live with and manage it — all too often on their own and in silence. Some patients can develop depression or anxiety as a response to CBS. There are, however, a variety of steps that can be taken to support low vision patients at risk for CBS, and to minimize its negative emotional effects:

1. Every health care practitioner, person with low vision, their family and caregivers should be educated about CBS.
2. Medical personnel need to learn how to correctly screen for and diagnose CBS (Menon, G., Rahman, I., Menon, S., and Dutton, G., 2003).
3. An approach to screening that makes it easy for patients to admit their symptoms must be in every physician, nurse and nurse practitioner’s toolkit. (Menon, G., Rahman, I., Menon, S., and Dutton, G., 2003). “You know, many people who have vision loss see things that aren’t there. It’s called Charles Bonnet Syndrome. These are nothing to worry about, but they can be upsetting if you don’t know that. Have you ever experienced anything like this?”
4. Any depression or anxiety should be treated appropriately with medication, counseling or some other applicable therapy (Light House International; Roberts, 2004).
5. “Normalizing” the experience is absolutely vital, but without being dismissive of any upset the visions may cause the person. “Yes, lots of people have CBS, and they think they’re going crazy or have dementia, but they’re not… who wouldn’t think at first that they’ve lost their mind?” (Royal National Institute for the Blind)
6. CBS patients should be encouraged to talk about their visions rather than remain silent about them. (RNIB; Menon, G., Rahman, I., Menon, S., and Dutton, G., 2003)
7. CBS usually stops within 12 to 18 months. Reminding the patient of this every so often can be helpful. “Oh, did you have one of your Charles Bonnet episodes again? What did you see? I hope it didn’t upset you too much. You know, it should go away in time.”
8. A good sense of humor can help in adjusting well to CBS (Roberts, 2004). Family and health care professionals can affirm lightheartedly how strange and bizarre the visions can be. Jokes about what is seen can be made, but only if the patient finds them amusing.
9. Fascination for the images and the wonders of the brain can help reframe CBS from a problem to an “experience.” “Isn’t it amazing how the brain is stimulating itself by making all those amazing images! Did you know you had all of these tucked away in your head? Your brain is just so remarkable!” “Butterflies flying out of your toaster? School buses driving down your hallway? What creativity!”
10. Refrain from psychoanalyzing the images to look for their deeper meaning – they do not yield productively to psychological interpretation. They are not the product of past trauma or unresolved feelings (Saks in Kiume, 2009).
11. Remind the experiencer that they have from the start had the wisdom to recognize that these visions are not real, though at first they may have had some doubts. When meeting moments where they may not be certain, examining the clarity and detail is often telling; hallucinations might be sharper than the person’s remaining eyesight allows (RNIB).
12. Since CBS episodes happen more often during “down time” than when the person is actively engaged in activities or with other people, decreasing their incidence may require finding ways to reduce social isolation, boredom, lack of stimulation, and low activity (Roberts, 2004; Murphy, 2012; Menon, Rahman, Menon, and Dutton, 2003).
13. Sometimes, eye exercises — such as looking from left to right without moving one’s head for 15 to 30 seconds — can help stop a hallucination.
14. Increased room lighting can sometimes prevent an episode of CBS visions if they commonly take place in low light (Murphy, 2012; RNIB).
15. Some report that stress and fatigue can exacerbate CBS. Reducing causes of and increasing coping skills around stress, and getting enough rest can sometimes help (RNIB).

While CBS can be frightening and stressful, there can also be positive outcomes. American author, humorist and cartoonist James Thurber lost vision in one eye as a child due to an accident. He reported many visions of strange things afterwards. It is suspected that he had CBS, and that these hallucinations fueled his amazing imagination. His hilarious stories and cartoons may have been a direct result of Charles Bonnet Syndrome (New World Encyclopedia).

References

Bellows, A. Chuck Bonnet and the Hallucinations. Retrieved September 5, 2012 from http://www.damninteresting.com.

Light House International. Charles Bonnet Syndrome. Retrieved September 5, 2012 from http://www.lighthouse.org/.

Menon, G., Rahman, I., Menon, S., and Dutton, G. (January-February 2003). Complex visual hallucinations in the visually impaired: the Charles Bonnet Syndrome, abstract. Surv Ophthalmol 48 (1): 58-72. Retrieved September 5, 2012 from http://www.pubmed.gov.

Murphy, C. When Seeing Isn’t Believing: Charles Bonnet Syndrome. (August 9, 2012) Scientific American. Retrieved on September 5, 2012 from http://www.scientificamerican.com/.

National Institutes of Health and the National Library of Medicine. Leading Causes of Blindness. NIH Medline Plus. Retrieved September 5, 2012 from http://www.nlm.nih.gov.

New World Encyclopedia. James Thurber. Retrieved September 5, 2012 from http://www.newworldencyclopedia.org/.

Royal National Institute of Blind People (RNIB). Retrieved on September 5, 2012 from http://www.rnib.org.uk/.

Saks, O., in Kiume, S. (2009). Seeing Hallucinations While Blind. Psych Central. Retrieved on September 4, 2012, from http://www.psychcentral.com.

Detailed hallucinations of unknown people, faces, buildings, cartoons, children and animals, patterns and designs the viewer knows aren’t real occur spontaneously in about one-third of people who develop low vision due to illness or injury, according to the Royal National Institute of Blind People.

Most people who experience such hallucinations think they have gone mad, because they don’t realize they are experiencing Charles Bonnet Syndrome (CBS). Often, patients remain silent and fearful about their symptoms, which can lead to much quiet suffering (Lighthouse International; Menon, Rahman, Menon, and Dutton 2003). This can develop into clinical depression or an anxiety disorder. Much of this suffering might be avoided if CBS were more widely known by the people most at risk for it and their care team members.

Named for the Swiss naturalist who first described it in 1780 (Bellows), CBS is not widely known. “Physician awareness and empathy are the cornerstones of management” for CBS (Menon, Rahman, Menon, and Dutton 2003). Sadly, too few medical professionals and most patients and their families have never heard of this syndrome, and even fewer know how to approach it with a likely-to-succeed approach. This two-part article will deal with education and empathetic management.

Why does it happen, this “phantom eye” phenomenon? One theory is that the brain is filling in information where there is none due to diminished vision. A parallel can be drawn to the neurological mixup that occurs with phantom limb. The syndrome results in sensation and pain as if a missing limb were still present.

An extension of this theory is offered on the website of the Royal National Institute of Blind People on their website:

Current research seems to suggest that, when you are seeing real things around you, the information received from your eyes actually stops the brain from creating its own pictures. When you lose your sight, however, your brain is not receiving as much information from your eyes as it used to. Your brain can sometimes fill in these gaps by releasing new fantasy pictures, patterns or old pictures that it has stored. When this occurs, you experience these images stored in your brain as hallucinations. CBS tends to begin in the weeks and months following a deterioration in your sight.

For more information about the possible biological mechanisms in CBS, see neurologist Oliver Saks’s informative and charming (though slightly controversial) talk explaining Charles Bonnet Syndrome neurology, which is linked here.

While the description “sees hallucinations” is accurate with CBS, it is not adequate to describe the full experience, nor is it sufficient to help differentiate CBS from other types of hallucinations. The following — especially taken together — are considered distinctive of Charles Bonnet Syndrome:

1. There is clear awareness by the viewer that the visions are not real, though initially he or she may second-guess that conclusion (Lighthouse International; Murphy, 2012; Menon, Rahman, Menon, and Dutton 2003).
2. The visions are not of recognizable people, places or events (RNIB).
3. There is no accompanying rich emotional or sensory experiences or memories other than the visual images (RNIB).
4. The viewer is not drawn into the hallucination and does not believe it to be real – there is a sense of detached watching, with the imagery lacking personal meaning.
5. The objects, people and animals may appear smaller or larger in scale than normal, or may appear normal-sized; seeing in miniature scale is also possible (RNIB).
6. The visions may interact and conform to actual surroundings; for example, people may enter through a door that is in reality present (RNIB).
7. The visions are detailed, clear, vivid, and complex, not vague or indistinct (RNIB; Bellows). Images are often much more clear than the person’s actual remaining vision allows them to perceive (RNIB).
8. Disembodied or distorted faces may be seen, as well as patterns, people, buildings, landscapes, cartoons, children and animals (RNIB; Saks in Kiume, 2009).
9. The visions are most likely to happen during “down” times as opposed to ones of active engagement (Lighthouse International; Murphy, 2012).
10. CBS usually lasts no more than 12-18 months (Lighthouse International; Murphy, 2012).
11. Anticonvulsants and haloperidol might be prescribed, as they reduce these episodes in some people (Menon, G., Rahman, I., Menon, S., and Dutton, G.; Roberts, 2004).

The second part of this article will focus on empathetically managing this syndrome, and ways that the stress and trauma of CBS can be reduced. Also included will be an exploration of ways some patients, their families and physicians have successfully interrupted or reduced these hallucinations.

References

Bellows, A. Chuck Bonnet and the Hallucinations. Retrieved September 5, 2012 from http://www.damninteresting.com.

Light House International. Charles Bonnet Syndrome. Retrieved September 5, 2012 from http://www.lighthouse.org/.

Menon, G., Rahman, I., Menon, S., and Dutton, G. (January-February 2003). Complex visual hallucinations in the visually impaired: the Charles Bonnet Syndrome, abstract. Surv Ophthalmol 48 (1): 58-72. Retrieved September 5, 2012 from http://www.pubmed.gov.

Murphy, C. When Seeing Isn’t Believing: Charles Bonnet Syndrome. (August 9, 2012) Scientific American. Retrieved on September 5, 2012 from http://www.scientificamerican.com/.

Royal National Institute of Blind People (RNIB). Retrieved on September 5, 2012 from http://www.rnib.org.uk/.

Roberts, D. Charles Bonnet Syndrome (CBS). (September, 2004). MD Support. Retrieved on September 5, 2012 from http://mdsupport.org.

Saks, O., in Kiume, S. (2009). Seeing Hallucinations While Blind. Psych Central. Retrieved on September 4, 2012, from http://www.psychcentral.com.

As heart failure has been linked to depression and cognitive impairment, Professor Osvaldo Almeida of the University of Western Australia, and colleagues investigated whether this is specifically due to the heart failure itself, or one of its causal factors.

They analysed data on 35 heart failure patients, 56 ischemic heart disease patients without heart failure, and 64 healthy people with neither condition. All were aged 45 years or above and had no obvious cognitive impairment. Magnetic resonance imaging (MRI) scans of the participants’ brains were assessed.

This is the first study of cognitive changes in heart failure to include patients with ischemic heart disease.

Participants with heart failure had a lower volume of grey matter in many areas of the brain than the other two groups. These patients also had lower scores on short- and long-term memory, had longer reaction speeds, and took longer to complete a reasoning task.

Professor Almeida explains, “What we found in this study is that both ischemic heart disease and heart failure are associated with a loss of cells in certain brain regions that are important for the modulation of emotions and mental activity. Such a loss is more pronounced in people with heart failure. Health professionals and patients need to be aware that problems caused by heart disease are not limited to the heart.”

In their paper, the researchers conclude, “Adults with heart failure have worse immediate and long-term memory and psychomotor speed than controls without ischemic heart disease.”

This could make it more difficult for patients to comply with complicated treatment regimes, they warn, stating, “Our findings are consistent with the possibility that patients with heart failure may have trouble following complex management strategies, and, therefore, treatment messages should be simple and clear.”

They add that further studies will have to be done to uncover the process by which heart failure leads to loss of brain cells, to see whether the problems become worse over time, and to discover whether patients could benefit from cognitive rehabilitation.

Natasha Stewart of the British Heart Foundation commented: “Heart failure can affect people in very different ways. More research is needed to confirm the effect on mental processes, so that treatment can be targeted to look after patients in the best possible way.

“The biggest implication of this research is that patients may find it difficult to stick to treatment regimes and forget to take their medication. It is important to speak to your doctor about what is best for you. Together you can find a way to make your meds a part of your daily routine so that they are less easily forgotten.”

Responding to the study, Dr. Christiane Angermann and colleagues at the University of Wurzburg, Germany, say that links between cardiovascular disease and dementia have been observed for decades. In fact, the label “cardiogenic dementia” was first used in 1977.

Smaller studies on humans have investigated the issue, with inconsistent results. A few animal studies have also been carried out, and these studies showed changes to the brain after a heart attack.

Another potential cognitive problem among heart failure patients is an inability to decide what to do if their condition changes. For example, a patient who has a cognitive problem and experiences sudden weight gain may not think to notify their physician. Their condition could worsen over time, resulting in an avoidable trip to the emergency room.

Richard S. Isaacson, MD, a neurologist at the University of Miami School of Medicine, recommends that patients bring a family member or caregiver to doctor appointments to help understand the treatment regime and the importance of taking medication consistently.

“People with heart failure are going to have trouble understanding because their thinking skills are not as strong as they used to be,” Isaacson says. “They often have multiple medical problems and difficulty understanding what they can do to help themselves.”

He supports the use of handouts to explain heart failure and its treatments, to help remind patients of what they need to do and why.

References

Cognitive and brain changes associated with ischaemic heart disease and heart failure. Almeida, O. P. et al. The European Heart Journal, February 1, 2012. doi:10.1093/eurheartj/ehr467

Cognition matters in cardiovascular disease and heart failure. Angermann, C. E., Frey, A.. and Ertl, G. The European Heart Journal May 29, 2012 doi:10.1093/eurheartj/ehs128

You’d think friends would draw closer at times like those. Many drift away instead.

“When my 3-month-old son was diagnosed with intellectual disability last year, lots of our friends just seemed to disappear. We’ve been caught up in his care, so I guess we don’t reach out much. But it would be real nice if they reached in.” Tom, knowing I was working on this article, spoke to me after playgroup.

Katie’s words during another conversation echo many parents’ pain. “Our 15-year-old daughter started stealing from our friends. At first it was little stuff — a lipstick, a pad of sticky notes. Then it moved to jewelry and money. It turns out she was selling the stuff to support a drug habit. Our friends stopped inviting our family over. That’s understandable. But then they stopped calling. I don’t get it.”

Josh is equally bewildered. “When our son was first diagnosed with cancer, his friends came around often and our friends were really there for us. The treatments have been going on for three years now. His friends don’t call very much anymore. We’re down to two really close friends who are hanging in there with us.”

Amanda was trembling as she talked to me. Her 19-year-old daughter was diagnosed with schizophrenia last year. “During her breakdown she lied about many things to many people and caused quite a bit of drama among her friends. Now my friends seem to have forgotten us. Where did they go?”

Families like these feel abandoned but are generally too stressed with the demands of taking care of the child and managing the complexity of the medical, legal or educational systems to give it much attention. All they can do is cope. What goes on that friends, even people they thought were good friends, stop coming around?

I think it has something to do with the lack of commonly understood rituals for persistent stress or sustained grief. As a culture, Americans do better with the finality of death. There are religious and cultural conventions for observing the passing of loved ones. People attend ceremonies or memorial events, send cards and flowers, make donations to the person’s favorite charity, and bring casseroles. There is usually enormous support for the first weeks and months after a death and often a more quiet acknowledgment among good friends for years afterwards.

The same isn’t true when the “loss” isn’t final or the stress is ongoing. There are no cards that acknowledge when an illness or family crisis becomes a continual challenge. There are no ceremonies for when the child’s and the family’s life is changed for years, perhaps forever. We have no rituals for the grief that keeps on giving or the stress that becomes a way of life.

In 1967, Simon Olshansky coined the term “chronic sorrow.” He was speaking specifically about the family’s response when a child is diagnosed with a developmental disability. He suggested that however much a family embraces the child they have, they are nonetheless repeatedly confronted with the “loss” of the child, and the life, they thought they would get. At each new developmental phase, parents are again brought up against the diagnosis and again acutely relive their initial grief. Watching friends’ children progress normally through the ages and stages makes the struggles and deficiencies of their own children painfully obvious and real.

For such parents, the pain from realizing their child is out of step with peers is interspersed with longer periods of feeling okay but stretched to periods of low-grade sorrow. Even while we love our children and celebrate whatever successes they may accomplish, the knowledge of their problems and the worries for their future linger in the background. The process rarely stops.

Although Olshansky was speaking specifically about families of kids with developmental disabilities, life is much the same for any family dealing with any perpetual issue. Friends of families dealing with “chronic sorrow” or chronic stress often don’t know how to react. The rituals that surround the finality of death don’t apply. The affected family may become so preoccupied or overwhelmed that they seem out of reach.

Some friends take it personally. They feel rejected when they don’t get included in the conversations and decisions about care and go away hurt or mad. Others have an irrational fear of the diagnosis or problem and worry that it’s “catching.” Still others feel helpless to deal with their friend’s stress. Not knowing what to say or do, they do nothing at all. Those who have moral judgments about the child’s illness or behavior or who are uncomfortable being in a hospital or sick room or courtroom are even more challenged. Still others are distracted by their own problems and can’t find the energy to support their friends. Whatever their good intentions, it’s no wonder these folks gradually fade out of the family’s support system.

It’s important for the affected family not to take it personally, even though it feels terribly personal. Such seemingly “fair-weather friends” can be invited back into our lives. It’s important to give them the benefit of the doubt. Maybe they didn’t want to be a bother. Perhaps they thought that no contact is better than doing something wrong. Not being mindreaders, they may not have known what kind of help would be welcome. If they are struggling themselves, they may need to be reassured that we don’t expect them to solve the problem or to become a major player in our child’s care.

Yes, it feels unfair to have to take care of friendships when a family already has too much to think about. But people really do need people, especially in time of need. It’s an important part of self-care to ask for support. Becoming isolated and overwhelmed makes it more likely that parents will become exhausted or sick and may be unable to provide enough support to the sick or troubled child.

Fortunately, there are usually a couple of friends who don’t need to be told and reminded. They can be our best allies in keeping in touch with everyone else. Those good friends can also help other friends know what is needed and how to be supportive instead of intrusive. Fortunately, most people respond generously and sympathetically once they understand that an affected family’s withdrawal isn’t about them.

And fortunately, there are support groups of other families for just about every illness and problem life can dish out. There’s nothing quite so affirming as talking with people who are dealing with the same sorts of things. These new friends can fill a need for understanding that old friends maybe can’t.

Me: Can you tell me a little about your learning disability and what you need from me?

Student: I have ADD.

Me: That can be really challenging. Can you tell me how it is going to affect you in my class?

Student: I can’t concentrate. Sometimes I kind of zone out and miss a lot.

Me: Yes. I understand that. Can you tell me how you have managed that in the past?

Student: Well, I always had a note taker in high school. Teachers would send me to the library to take quizzes and tests. And my mom always helped me clean up my papers. She’d ask me questions so my papers didn’t go all over the place. Oh, and my teachers would check in with me when they saw me looking blank.

Me: Did any of that help?

Student: Sure. I don’t always know what to write down so the note-taker’s notes were better. But sometimes I couldn’t do the quizzes even in the library.

Me: So, then what?

Student: Well, some teachers let me take the test orally. Like, if you read me the questions and ask about it, it can keep me focused. Some teachers didn’t want to do that, though, which is unfair since I can’t help it. My mom says she can keep helping me on papers by email.

Me: Hmmm. So how much do you know about ADD? And what have you figured out so far about how you can be independent and keep up with things in spite of it?

Student: I don’t know what you mean. I told you what teachers and my mom do to help. . .

This is a big problem. This student’s idea of managing her disability is to rely on other people. It’s long past time for her to learn strategies for helping herself. The reality is this: The further she goes in her education, the less she can expect others to take her notes, provide her with a quiet place, or clean up reports and papers. Once she gets into a profession, most employers would be dumbfounded if she said, “Well, I have ADD so I can’t do this report by myself or on time and you need to accommodate that.”

It isn’t solely the student’s fault that she’s entered college without important skills. In spite of the fact that more and more kids with learning disabilities are going on to college, the majority of high schools don’t provide good transition planning. In their desire to be supportive, well-meaning parents may have been over-involved in their kids’ school work since elementary school. Teenagers often don’t have the perspective to know how important it is to learn how to compensate for a significant learning difference.

Regardless of whose fault it is, though, if you have a learning disability and are headed for college, it now falls on you to do some preparation. Now it’s up to you to master the learning disability so it doesn’t get in the way of academic and professional goals. There are many things you can do to ensure your own success.

10 Strategies for Success for Learning-Disabled College Students

1. Research your disability. Know what you are dealing with inside your own brain. Be able to explain it clearly to your professors and to service providers. If you had an IEP (Individualized Education Plan) in high school, it may be a useful source of information.

2. Get acquainted with the services available at your college. The staff at the advising center can be good advocates for you if you need help negotiating with a particular professor. Many schools have a writing center where advanced students are available to help you organize and edit your papers. If there is a tutoring program and you generally need some one-to-one help to master material, sign up immediately. Don’t wait until you are behind. And please don’t be shy about signing on for some therapy if the school has a mental health center. College can be stressful for anyone but particularly so for those with learning differences. A therapist can help you learn more ways to cope if things get tough.

3. Whenever possible, choose classes that are more compatible with your learning needs. Consider size of the class, time of day, and whether you need a free hour before or after to organize your thinking.

4. Fill out the appropriate forms and take them to your professors on the first day of class. Most will be happy to provide those reasonable accommodations. Most are not happy to be presented with a form halfway through a semester when you are already way behind.

5. Be proactive and stay in communication with professors. Go to office hours and help sessions. Ask for clarification of an assignment if you don’t quite understand what is expected. Faculty are most supportive of those who show they are engaged in their own learning.

6. Understand what is not fair to expect of your professors. You are entitled to reasonable accommodations. You are not entitled to a one-on-one session after every class. You are not entitled to a good grade for work that doesn’t meet the goals or the standards of the course. Professors usually can’t be responsible for tapping you on the shoulder every 10 minutes to make sure you are tuned in or for reminding you of deadlines.

7. Know your strengths and work with them. If you are great at organizing material but not so great at public speaking, volunteer for the organizing part of a group project and ask someone else to take on the bulk of the presentation. If you do better taking in information by hearing it than by reading, sit up front and pay close attention to the lecture.

8. Work on time management and organizational skills. Accept that calendars, lists, and schedules are your best friends. If well-intended parents and teachers have always served as your personal calendar keepers and organizers, give it up. It’s now up to you. If you have a history of being late with assignments, forgetting details, or getting overwhelmed by expectations, face it and take charge. When given an assignment, put the due date on the calendar, map out what you need to do each day to meet it, and make lists of what materials and resource you’ll need. It’s very satisfying to check items off as you go along.

9. Develop “workarounds,” a series of strategies for working around your disability. Some students I know go to two sections of the same class in order to give themselves two opportunities to hear the same material. Some schedule classes so they always have an hour after each class — while information is fresh — to go over their notes. Others rewrite their notes right after class as a way to impress the material on their memories.

Maybe you need to record classes or take advantage of note-taking services. Maybe you need to allow twice as much time as your roommates to do assignments. Accept that you do need to make accommodations for yourself.

10. Take good care of yourself. The problems of learning disabilities are multiplied if you don’t get enough sleep, if you don’t eat right and get some exercise, or if you don’t balance your school tasks with some fun. Stress and poor habits make things much, much worse.

A learning disability is not a sentence. It is part of you, just as surely as your height, the pitch of your voice, or whether you are right- or left-handed. Ignoring your disability won’t make it go away. Relying on others to take care of it for you only limits your potential for success and makes you ever-dependent on the tolerance of others. Taking charge of it, on the other hand, means you have as much potential as everyone else.

It’s true that almost half of college students with learning disabilities don’t complete their degrees. But it’s also true that 54 percent do. It’s largely up to you which group you belong to. You are certainly smart enough to do college work. By accepting your disability and adopting supportive strategies, you can earn that diploma.

Richardson highlights the significant role Knox played in devising methods of screening immigrants for mental deficiencies during Knox’s brief four years as an inspecting physician at Ellis Island, from 1912 to 1916. Knox and his colleagues were charged with assessing immigrants’ mental capacities, because federal law then mandated that anyone deemed to be an “idiot,” an “imbecile” or “feeble-minded” be denied admittance to the country on the grounds that they would pose a burden to the state.

Under significant public pressure to carefully cull the arriving groups for those deemed mentally deficient, Knox, with help from colleagues, devised a battery of pioneering “performance tests.” They were the first to attempt to measure intelligence in a “culture-free” way — one that would not penalize test-takers whose first language wasn’t English or who had grown up with skills and cultural knowledge very different from those one would acquire living in the United States.

As Richardson shows, Knox’s contributions to intelligence testing ultimately reached far beyond the immigration center in New York Harbor to influence towering figures in the field. Richardson discusses the eugenics movement that flourished during this period and, most significantly, provides a comprehensive history of intelligence testing in the first half of the 20th century.

The result is an exhaustively researched book that will surely appeal to historians of intelligence testing and historians of science, as well as professionals with a particular interest in the developmentally or mentally disabled. However, it is likely to prove too detailed and scholarly to sustain the attention of most general readers.

Knox is a fascinating figure, a young general physician who seems to have fallen into this area of research almost by accident. He was posted to Ellis Island during a time when screening immigrants for mental deficiencies was both a legal mandate and a topic of broad public concern. As Richardson writes:

For just four years, between 1912 and 1916, Knox was not just a conscientious physician and government employee; he was also a highly prolific scientist at the forefront of developments in the construction of intelligence tests.

Richardson argues that even though Knox’s contributions to intelligence testing were largely overlooked and forgotten, especially in the decades after the Second World War, he should be looked at as “a major figure” in the field. His work provided a key link between earlier pioneers, such as those whose work formed the basis of the famous Stanford-Binet IQ tests, and later, even present-day, researchers.

In particular, Richardson convincingly argues that Knox’s approach was groundbreaking because he set out to create tests that, at least in theory, would not rely on immigrants’ verbal knowledge or familiarity with norms of American or Western European culture. These “performance tests” were adapted and incorporated into intelligence testing and cross-cultural research around the globe in ways, Richardson says, that Knox himself “could scarcely have imagined.” 

Knox’s ideas about the importance of nonverbal testing were an inspiration for the developers of many later tests, including large-scale mental testing carried out on Army recruits during the First World War; cross-cultural research on ethnic minority populations around the globe; and the Wechsler Intelligence Scale, which are still among the most commonly used assessment methods. One included a version of one of Knox’s tests until its 2008 revision.

Despite his obvious respect for Knox’s achievements, Richardson is ultimately critical of Knox-style performance tests’ ability to be truly “culture-free” and to rely on completely nonverbal means of administration and execution. Richardson cites research, for example, showing that ethnic minorities’ scores on performance tests in many different areas of the world have been higher depending on the extent to which they were exposed to Western culture by being educated in Western-style schools. In the end, Richardson writes:

The tests are artifacts constructed within a specific culture, and they cannot be expected to transfer to different cultures from the one in which they were constructed.

Unfortunately, most of Richardson’s apt analysis doesn’t come until the end of the book. He spends most of Howard Andrew Knox presenting a straightforward and detail-laden history that relies heavily on archival research but tends to bury the readers in facts, with little guidance as to how to interpret their significance.

Richardson seems to have combed the historical record thoroughly, so the lack of analysis may be due in part to gaps in the available source material. For example, although he provides a thorough examination of Knox’s academic and popular writings describing and publicizing the tests, Knox doesn’t seem to have kept personal journals or to have carried out extensive personal correspondence that would allow more in-depth insight into the rationale and motivation behind his work.

As a result, we get a detailed picture of the tests he developed – or helped develop, since evidence is lacking about exactly what role his colleagues at Ellis Island played in devising the tests. But the picture of Howard Andrew Knox the man is more thinly fleshed out, including the intriguing question of why his involvement in the field of intelligence testing was so brief. After just four years, he left Ellis Island to become a “country doctor” with no involvement in the field of research or even in administering the tests he created.

Still, the book provides an important account of the role that one man played during a fertile and important period in the history of American immigration and intelligence testing.

Howard Andrew Knox: Pioneer of Intelligence Testing at Ellis Island
By John T.E. Richardson
Columbia University Press: November 22, 2011
Hardcover, 352 pages
$55

Rosenthal shares her battle with Stevens-Johnson Syndrome (SJS), leading us from her diagnosis at age 13 through 24 subsequent years of psychological repercussions. Rosenthal recounts the story of how she fought for years to overcome her PTSD, and managed to slowly climb her way out of a serious case of depression and anxiety, experiencing a rebirth along the way. Ultimately this results in a remarkable tale of personal strength and post-traumatic growth.

The book is divided into four sections: ‘Shock;’ ‘Confusion;’ ‘Clarity;’ and ‘Healing,’ with each of these representing a different stage in Rosenthal’s journey. The first, ‘Shock,’ describes Rosenthal’s life ‘before the world intruded’ – the innocent childhood cut short by the onset of her terrible illness. ‘Confusion’ and ‘Clarity’ cover her emotional journey in coming to terms with this trauma, and ‘Healing’ describes her eventual recovery and return to happiness.

Not only is Johnson one of the 0.5 people per million to suffer from SJS, but in her case it also develops into its most extreme, life-threatening form, Toxic Epidermal Necrolysis Syndrome (TENS).The symptoms of this are a form of blistering so serious that Rosenthal has to be treated in a hospital burn unit. She recounts the condition’s sudden onset with such excruciating accuracy and vivid attention to detail that you may find yourself wincing as you read about the unbelievable pain she had to endure. Rosenthal recalls meeting the hospital psychiatrist, and being unable to put her experience into words at the time:

I did not tell her how drastically I felt changed. I did not say out loud that I was trying to suppress the memory of a pain so intense it defied words. I could not explain that I was struggling not to be overwhelmed by a staggering number of new fears and feelings, nor even the latest fear: that I had survived the physical onslaught only to be outdone by the emotions in its wake.

Indeed, it is these subsequent emotions which later cause Rosenthal to become disconnected from the rest of the world. She survives a near-death experience, and then sinks into a state of deep depression, anxiety, insomnia, and eating disorders.

Rosenthal shares the following quote from Dr. David Biro’s memoir One Hundred Days: My Unexpected Journey from Doctor to Patient:

Doctors love a good zebra. Patients with rare, exotic diseases. We crowd around to see them, touch them, photograph them. We put them on display at conferences. We write their stories in journals. We do all this, I suspect, because they reawaken the spirit that first pushed us into medicine: a fascination with the human body, its incredible achievements and its terrifying failings.

It is this idea of an “exciting zebra” for the medical community that Rosenthal most strongly identifies with throughout her struggle. She reluctantly adopts this as her identity, labeling herself as a “medical anomaly, alone, a freak.”

Eventually, 16 years after her initial diagnosis, and following countless fruitless attempts at a cure by her doctors, Rosenthal decides to seek a different kind of help. She arranges to see a psychotherapist, named Greg. It is this work with Greg, and an introduction to transcendental meditation, that signals a change for Rosenthal: She talks about her experiences for the first time and begins to discover her true voice, escaping the fearful clutches of her Ego voice. Remembering her college days, Rosenthal writes that “[W]riting was good for me. It gave me a focus outside my physical discomfort and limitation. It gave me something in which to bury the emotional angst I carried and also a place to explore how and when and why to find language and choose words.”

As her sessions with Greg evolve, Rosenthal recalls that:

I became more of a full self: I defined boundaries, learned how to communicate, and started more consciously mulling the question, ‘What do I want?’… I made a list of twenty-two things I was afraid of. At the top of the list: ‘I am afraid of myself.’ And yet, I wanted more and more to become myself. Writing seemed to be the path to that connection.

She begins to make significant progress, and to feel in control of her life, so Rosenthal terminates the sessions with Greg. But another onset of the illness sparks a relapse into her depressed state, as she is once again forced to resign herself to the role of patient, or ‘zebra.’ It is this relapse which finally triggers the turning point for Rosenthal, as she fully acknowledges the fear she has lived with – and denied – for so long. She decides once and for all to “reclaim myself,” with Greg’s help:

We break through the fear to a point where I begin to imagine for myself a different life than the invalid one I am used to. This happens oh, so slowly, but I hear the machinery grinding in my head. I fantasize I could be her, the girl of such vast energy I glimpsed for just a moment in the hospital. I imagine myself strong and free and vibrant and healthy and able to succeed without enduring the pitfalls of illness. One day, walking along the beach I feel myself as I would like to be: happy, unafraid, able to live without looking back, a strong source of joyful vitality.

Crucially, through her ongoing therapy sessions, and by reading two life-changing books – Joan Didion’s ‘The Year of Magical Thinking’ (a parent’s perspective of a child’s grave illness) and Elizabeth Wurtzel’s ‘More, Now, Again: A Memoir Of Addiction’ – Rosenthal realizes just how important her writing is to her, and how it can offer her a solution to her problems:

Socrates wrote that language is ‘an activity that moves the soul towards definition.’ Words can deliver us from our solitude, or deepen it. They are our most specific form of translating what exists in a heart through the landscape of a mind. I have always used language as a fence, as a guardrail against truth, definition, and exposure. So often my words have cloaked my self in disguises designed to ensure anonymity. Or, the lack of words has kept me separate from even myself. Recently, however, I sense the ability to use language in another way. I begin writing poetry again, starker poems and more to the point, writing more directly than ever about the aftereffects of illness and its consequence on identity… I begin to feel safe… I understand the problem has been that I never acknowledged my past and then came back to the present. Instead, I have lived in the trauma and run away from myself in every moment. It is time to sit still.

This will certainly sound familiar to anyone who has ever studied the concepts of Narrative Therapy, and it is ultimately — through her writing, a discovered love of music and dance, and a new identity – that Rosenthal finally overcomes the trauma of her illness and truly achieves happiness. At the end of the book she states that:

I can describe myself as if TENS never happened: I am a dancer, I am a writer, a creator, a lover, a partner, a daughter, a sister, a friend. I am a dog owner, a Floridian, a beachwalker, a homeowner. I am a joy seeker. I am a believer in my self. I have conquered the past. Now, I am creating my future as a woman who is connected, strong, and free.

Notably, Rosenthal is many things, but she is no longer a ‘zebra’.

Today Rosenthal works as a post-trauma coach, using the wisdom gained from her own experiences to help others, and employing the philosophy that “we can’t always find meaning in our trauma, but we can learn to make meaning come out of it.”

This is an honest, triumphant story of personal courage in the face of adversity, and will undoubtedly help anyone who has ever dealt with the effects of trauma or illness. At one point in the book, Rosenthal states that “Writing seems like the only thing that can save me,” and I am grateful that it has. Rosenthal is a survivor, and hopefully her story will help many other victims of PTSD work toward their own recovery and post-traumatic growth, finding happiness and a new sense of identity along the way.

Before the World Intruded: Conquering the Past and Creating the Future, A Memoir
By Michele Rosenthal
Your Life After Trauma, LLC: April 9, 2012
Paperback, 230 pages
$14.95

Those suffering from major traumas such as sexual or physical assault, combat experiences, accidents or the sudden death of a loved one can be diagnosed with post-traumatic stress disorder (PTSD) if certain symptoms exist. These include intrusive thoughts of the event; nightmares or flashbacks; avoidance of reminders of the incident and increased arousal, which can include problems such as sleep difficulties; angry outbursts; being easily startled or having difficulty concentrating.

Research has also indicated that medically unexplained physical symptoms, including fatigue, gastrointestinal problems and pain can also go along with this disorder. Anyone suffering from PTSD can benefit from EMDR therapy.

In order to be officially diagnosed with PTSD it is necessary to have experienced a major trauma. However, recent research has also revealed that other, less dramatic life experiences can cause even more symptoms of PTSD than major traumas. Many of these disturbing life experiences take place throughout childhood and can include hurtful experiences with parents or peers. The negative impact on the person’s sense of self takes place since, just as with diagnosed PTSD, “unprocessed memories” are running the show.

This happens because the experience was so disturbing that it disrupted the information processing system of the brain. One of the functions of this system is to take disturbing experiences to mental adaptation. So if something happens to us that is disturbing, the processing system “digests” the experience and the appropriate connections are made, while the reactions that are no longer useful — such as the negative self-talk, emotions and physical sensations — are let go.

However, if an experience is too disturbing, it disrupts the system, causing the memory to be stored with the negative emotions, physical sensations and beliefs. Current experiences must link with the memory networks in our brain to be interpreted. If there is an unprocessed memory, the negative emotions and sensations can emerge and color our perception of this current situation. In short, the past is present.

That’s where EMDR therapy can help. While EMDR cannot remove a problem caused by genetics or organic injury, the research indicates that even in these cases negative life experiences can exacerbate problems. When a person is held back from doing things he or she would like to do by feelings of insecurity, anxiety, fear, or unremitting sadness, or is pushed into doing things that are not useful — such as overreacting to people or situations — the reason can generally be found in the memory networks. Many times the problems are unprocessed memories from the past that are poisoning the present.

In my new book, Getting Past Your Past: Take Control of Your Life with Self-Help Techniques from EMDR Therapy, I provide numerous procedures that will allow the reader to identify the earlier memories that are at the root of their problems, and ways to change their emotions, physical sensations and negative thoughts. There are also techniques to help achieve desired goals in work and social relationships. These self-control techniques can make life more manageable, and understanding why we are doing things that don’t serve us can often help to bring things into perspective.

But if the techniques aren’t sufficient to give you a good feeling about your life, or you feel better for awhile but the old feelings continue to come back, then it would be useful to read the stories in the book that illustrate why different kinds of problems emerge, and decide if EMDR therapy would be a good choice for you.

Part of that evaluation involves taking stock of both your personal and professional relationships. Do you feel happy and fulfilled? Do you have a good support system? Or do you feel frustrated and troubled by disturbing thoughts and emotions?

Generally, there are three categories of negative feelings and beliefs that can emerge. These are the feelings of not being good enough, not being safe, or not being in control. If we often feel insecure, fearful or anxious — or notice that these feelings arise intensely in certain situations — we have the tendency to blame ourselves. Friends aren’t able to reassure us no matter how hard they try, because the problem is generally caused by the unprocessed memories associated with the negative emotions, physical sensations and beliefs.

When certain things happen in the present — even minor ones, like the expression on someone’s face — the memories can get triggered and the emotions, beliefs and accompanying sensations (like a tightness in stomach or chest) surface. We don’t get an image that goes along with it, so we don’t realize it’s really the “old stuff.” Then, since our distress can debilitate us, we may have problems interacting with people in the present, causing new memories of “failures” to be stored and thus increase the problem. That’s how depressions can also increase: our new negative experiences just dig the hole more deeply.

So, the bottom line is that we deserve to have happiness and fulfilling relationships. Problems involving negative thoughts and emotions are generally the result of negative past experiences that are improperly stored in our brains. The negative feelings may appear to be true to us, but they are actually the result of physiologically stored memories. This makes it not a “mental problem,” but rather a physical problem that can be remedied. If you break your leg, you would not just hobble along. You’d have no question about going to a doctor to align your bones properly so that healing can take place.

Likewise, if you go to an EMDR therapist for assistance, a good history will be taken and you will be prepared for memory processing. Then the memory will be accessed and aligned in a certain way, while the information processing system of the brain is stimulated so the memory can be transformed into an adaptive learning experience. The negative emotions, physical sensations and beliefs can be discarded and a positive sense of self can emerge.

EMDR therapy is not limited to simply taking symptoms away. It addresses the past, present and future. The goal is to allow the person to achieve a complete state of emotional health. It has also been used to help athletes, performers and executives to achieve a state of “peak performance.”

If you feel stuck personally, or in your relationships, and the self-help techniques provided in Getting Past Your Past are not sufficient, then consider fully addressing the problem with EMDR therapy. Ultimately, the goal is to liberate you from the confines of the past into a happy and productive present and a fulfilling future.

As I read the article, I was reminded of an experience I had as a consultant to the Pollard Junior High School in Needham, MA back in the early 1970s. Yes, that is a long time ago! I suppose what I am about to describe was actually a very innovative concept that was ahead of its time.

In the 1970s, Massachusetts had separate funding for special education services for students diagnosed with significant emotional/behavioral problems. Providing these services in junior high schools presented especially challenging tasks for educators. Part of it was the context. Junior highs had always seemed like a bad idea to me and many others. Isolating teenagers when they are feeling disconnected from the world around them (family and community) only seemed to exacerbate their developmental issues. Obviously those teens who were struggling the most would be even more problematic in such an environment.

This was also a time when drug use had begun to reach early teens. (Of course, now this problem starts much younger.) Everyone was grappling with how to deal with this issue and there were few resources or successful interventions that had been established.

At the time, we were fortunate to have a Director of Special Education in Needham who was very open to trying new approaches to solving tough problems. In addition, the principal and assistant principal at the junior high were also very eager to try something new because the old model (isolate in a small class; punish unacceptable behavior) wasn’t working. One of the guidance counselors agreed to be assigned to the program. We had worked together with a number of children he had referred to me in the several years I had been in private practice in Needham. So when he asked me about joining their team as a consultant I was honored and excited. [It was a pro bono arrangement and understood that I could not receive referrals of any of these students.]

The basis of what we evolved relied on the following facts: these students had a long negative history with school, saw the system as being against them, did not see educators as caring or helpful adults in their lives, and viewed themselves as losers. They were all boys (unfortunately still a common finding), frequently explosive, typically arrived late or took off during the day, and came from families that were beaten down by years of behavioral problems at home and in the community.

To these facts we added some assumptions that led to a new approach: everyone has strengths (what Dr. Brooks refers to as “islands of competence”) and success required identifying these strengths and building on them as opposed to the deficit model which tries to fix the weaknesses, an approach that, unfortunately still dominates our educational system and only serves to further damage the self-esteem of struggling students; these students could not spend six hours in school; we needed to get them to believe we actually cared and that we genuinely wanted their involvement in finding solutions; parents needed support and had to also buy into what we were doing.

The most innovative aspect of the program was to have the students get academic credit for time spent volunteering in work or other school settings. This would be supervised by visits from the guidance counselor, supported by weekly classes that were more like support groups where the teens could discuss the challenges of meeting expectations in these settings as well as sharing their successes. In addition, the number of school subjects was reduced (remember they were earning credit in these work placements; that concept was a key factor in changing the students’ perceptions that nothing about school could be positive) and we used high school students to tutor/mentor these teens in the few formal classes they still had to take, reducing the time they spent in the “retard room” as they called their special ed classroom.

These tutors were carefully chosen to fit the interests of our students, so some of their time together could be spent talking about subjects of common interest (cars and music were especially high on the list). Obviously, part of the concept was to expose the students to the idea that kids like them could find success in school and have a plan to do something positive after graduation.

I’ll share some examples of what we did. My favorite is about a boy who loved animals. He admitted he once thought about being a vet but soon “realized” he was too stupid to ever become one. We arranged with a local animal hospital for him to “work” there every morning from 8-10am. This student, who usually failed to arrive at school until about 10am, was nearly always on time for his new job. The people at the animal hospital were great and gave him the opportunity to have contact with the animals as opposed to sweeping the floor. He had a natural affinity for the animals, which they responded to, and the staff often complimented him on how helpful he was. This young man suddenly felt good about something in his life and it was a part of his school program! He received credit for two courses since he spent an equivalent amount of time there. And no homework!

The work placement model included assisting an electrician, working with the maintenance staff at the high school, working at a gas station, and in a music store (this last one actually led to giving some lessons to young children because the teen had his own band and was a reasonably skilled drummer). I know there were a few other placements but those are the ones I can still remember after all these years. For some of the teens we used a placement that has remained popular for decades: tutoring elementary school children. The idea that they could teach was off the charts for these students who saw themselves as stupid and lacking academic skills. While they may have been years behind their peers in most classroom skills, they knew enough to teach young children. More important, as has been proven over and over in many contexts, the ability to make a difference in the lives of others can be a life altering experience. It clearly contributed to a very different self-image for these teens.

Creating this new program not only took the support of key people in the system but it also required arranging transportation from work setting to school (or both, because some of the students came to school in the morning and did their placement after lunch). Fortunately the town had a small bus that we were able to utilize. An unexpected positive fall-out from this new model was that the special education teacher no longer needed an aide since her class was usually smaller. In fact, because of the involvement of the high school tutors, sometimes the teacher had free time to consult with other teachers in the school who still had contact with these students or just to work one-on-one with a student.

After a couple of years we were pleased with the progress we observed. It was a mixed bag, not a miracle “cure.” Some of the students made dramatic gains, others modest ones, and only a few were unable to benefit at all (as I recall these were the teens that had the most significant drug problems). We were excited about continuing but, sadly, the program came to an abrupt end. A new director of special education came in and did not support the program. That’s all it took. I was not allowed to continue consulting and the guidance counselor was required to focus his time elsewhere. The program was eviscerated, which only served to emphasize what we all knew going in: you must have full support of the system or even the best of ideas is doomed to fail.

I have enjoyed recalling this experience after it had slipped from my mind many years ago. While, as Dr. Brooks reports in his article, many innovative programs like this can be found all across the country now, there are still too many places where a strength-based approach is not utilized, especially one that reaches out into the community and finds a place where these beaten down students can fit in successfully. I share these memories with you in the hope that it triggers some readers to try to build such a model in their own school for the next school year. If that happens, I would love to hear from you.

Kids at lockers photo available at Shutterstock

Kennedy and Banks are mothers, as well as professionals who previously collaborated on the book The ADHD-Autism Connection, and each has multiple children who are twice exceptional.  “Twice exceptional” is a term that they address in the beginning of their book. They write that it is “a relatively recent term that refers to children who have dual ‘exceptionalities’—that is, exceptional gifts (creative, academic, intellectual, or physical abilities) along with a learning or developmental disability.”

Temple Grandin is perhaps one of the world’s most successful people with autism. She has her PhD in animal science and is both a professor and an author.

As they did with the term “twice exceptional,” the authors begin with a lot of contextual information to help explain the terms, intentions, and needs for writing this book. They go on to implore, as does Temple Grandin in the preface, that changes be made.  These twice exceptional (or 2e, as Kennedy and Banks come to say) children are falling through the cracks because their disabilities are being granted power over their abilities.

The book is organized into three sections. All three are equally important in helping a child with 2e: ‘Who They Are,’ ‘Why They’re Stuck,’ and finally, ‘How to Help Them.’ Since Kennedy and Banks are both mothers, they take care to explain that this is a book meant to help parents in a variety of ways.  This book is not just an offering of support and resources, but it also breaks down the issues of why these children are “stuck” in the first place.

Temple Grandin, as you may have already known from the HBO movie based on her life, has had great success cultivating her abilities despite having autism.  Kennedy and Banks mention that she is a perfect example of being “bright and not broken,” a goal they have for all children, 2e or not.  They believe that the success of each child will greatly help the world because these children can then feel good about what they can contribute, instead of being stuck on what they can’t do.Temple Grandin brings attention to how some children with autism introduce themselves, saying that they tell her their disorder first—showing that they define themselves by their limitations.

The authors give some context to these disorders by explaining that 2e kids today are tomorrow’s “Albert Einstein, John Couch Adams, Thomas Edison, Sir Isaac Newton,” and the list continues.  Many of these classic figures had symptoms that today may have been diagnosed as ADHD or autism. For example, Einstein didn’t speak until he was 3 and Gregor Mendel, who gave us the foundation for modern genetics, couldn’t pass the exam to qualify to teach high school.  Had these men been labeled with a disability, they may never have achieved their greatness, because they may have also defined themselves by limitations.

Kennedy and Banks also break down ways to help teachers and parents identify their child’s gifts.  They explain these disorders in a refocused way by giving supportive and caring definitions that require a deep understanding.  These new definitions were created by combining a parent’s care and understanding and the experienced intelligence of a professional in the field.

As mentioned, all the sections of this book are important for understanding the entire issue at hand, but the section on ‘Why They’re Stuck’ is extremely informative and explains exactly how and why the current system is not doing these children justice.  Particularly, they explain how important it is for parents to know the different debates in standardized testing.  This way, they can avoid falling into the trap of defining their child by these flawed systems of measurement.  I found this section to be the most intriguing because after you read it, it will be nearly impossible for you not to want to change the system.  Kennedy and Banks have certainly done their research, but they also show how to apply it in a practical way, making this book a great help to parents and professionals alike.

Finally, they talk about diagnosing and educating the whole child instead of just labeling one aspect of them.  This new type of diagnosis and education factors in all their needs and gifts, showing how to adapt it to individual children because, after all, we all have individual needs.  Most importantly, Kennedy and Banks keep reminding their readers that 2e children have so much so offer the world and they want to make that happen.  Also, if you want to do more exploration, they end with a long list of helpful additional resources.

Personally, they have convinced me that in an attempt to help people with disabilities, we have hurt them by labeling them.  This label can hurt them because if focuses all the attention on what they cannot do, instead of also exploring what they can do.  This book is truly inspiring and it shows that by simply changing our perception of these children, and then the testing and education that stems from that perception, we can help them become successful, contributing adults.  Perhaps they could even make history.

Bright Not Broken: Gifted Kids, ADHD, and Autism
By Diane M. Kennedy and Rebecca S. Banks
Jossey-Bass: September 13, 2011
Hardcover, 320 pages
$24.95

The article touches on various issues that arise as a result of so many students needing services. Schools are left to figure out how much and how best to accommodate students with documented disabilities. Who should make these decisions? Faculty? Individual teachers? Counselors? Disability coordinators? And what about those students without documented disabilities who request help? Most likely some of them are indeed suffering from some form of mental illness and have not yet been officially diagnosed. It is also likely that some students are just trying to take advantage of the system: Get a slip from the counseling center and avoid taking that exam for which you neglected to study. There are lots of different scenarios and it is up to individual colleges to develop policies to deal with them.

While laws governing special accommodations in public elementary and secondary schools can be quite detailed, colleges and universities are left to develop their own guidelines within the framework of the Americans with Disabilities Act (ADA), which basically states that these students cannot be discriminated against.

Obsessive-Compulsive Disorder and Students

So where does this leave those with OCD? We already know that OCD is complicated and often misunderstood. While therapists can make recommendations for accommodations, the truth is that sometimes those with OCD don’t know what they need until after the fact.

My son Dan, like many OCD sufferers, often has trouble with time management, the balance of details within the big picture, and over-thinking. All of these issues have hampered him in college at one time or another. He now knows that he needs to be accommodated with regular, detailed feedback on his projects (he is an artist). Really, that is all he needs to redirect his focus appropriately. But it was an arduous process just to get these simple, yet vital, accommodations in place.

“Typical” accommodations for those with other disabilities often are not helpful to those with OCD. Indeed the results can be just the opposite. Extended time for testing and handing in assignments, for example, can wreak havoc on OCD sufferers. More time means more opportunity to ritualize, and more ritualizing may intensify the OCD. So this “helpful” accommodation can end up hurting students who struggle with the disorder.

To make matters even more difficult, students with OCD are often reluctant to take the initiative to discuss what they need. It is extremely difficult to explain OCD to those who either have preconceived notions or know little about the disorder. Telling a teacher that it takes you much longer to read a book than most people because you have to reread every page multiple times, or admitting that you are so afraid of not doing an assignment perfectly that you don’t do it at all, can be embarrassing and anxiety-provoking for the student with OCD. Again, these situations can be hard to anticipate and may come across as made-up excuses to faculty and staff who do not understand the disorder.

As more students with documented cases of OCD are sure to arrive on campuses, this problem likely will get worse before it gets better. So what can be done to help these students? How can we be sure that they are afforded the chance for a “level playing field” in their education?

We need to continue advocating for OCD awareness. We need to spread the word as to what OCD really is and isn’t. The more we talk about obsessive compulsive disorder, the more we can help people understand how this illness may affect students. And my hope is that the more educated we all become, the more comfortable we will be about talking about OCD and other mental health disorders, thereby reducing the stigma of these illnesses. The more we understand about OCD, the clearer it will be that the best accommodations for students suffering from this insidious disorder just may come in the form of open-mindedness, support, flexibility, and trust.

With no time clock to punch and no boss monitoring your comings and goings, starting the day can be difficult, according to Deborah Serani, PsyD, a clinical psychologist and author of Living with Depression: Why Biology and Biography Matter along the Path to Hope and Healing. Or, just the opposite, you might work through your days and even on weekends, she said.

Working from home is tricky because it “requires a person to shift…from personal to professional mode,” Serani said. And that means a lot of self-discipline, which is regularly tested with piles of laundry and dirty dishes, she said.

Other sights and sounds also can pilfer productivity, she said. For Therese Borchard, author of Beyond Blue: Surviving Depression & Anxiety and Making the Most of Bad Genes, those distractions are her two lab-chow mutts, who ferociously bark at passersby, and a barrage of phone calls.

In addition to struggling with the same concerns, individuals managing a mental illness also grapple with unique challenges. Below, Borchard and Serani, who both live with mental illness, provide productivity pointers and share what works for them.

1. Create structure. Structure helps to create boundaries around work, home and play, which boosts productivity. Serani has been a self-employed psychologist and work-at-homer for almost 20 years, so she’s developed a good rhythm that keeps her productive. “I awaken the same time every day, and give myself two hours to get as much chore work and personal work done as I can.” Any tasks that are left get done after work.

2. Set realistic goals. Be sensible about what you can accomplish in a workday and at home, Serani said. “Living with a mental illness requires us to strive for well being each and every day,” she said. So it’s key to avoid overextending or overcommitting yourself to either home or work projects.

3. Map out your day. Productivity also requires a specific plan. For instance, Borchard writes down a task she needs to accomplish and approximately how much time it’ll take. Again, keep these goals reasonable. “I would give myself two to three hours to write a blog post. Some took longer, and others were easier,” said Borchard, who also writes the widely popular blog Beyond Blue.

4. Identify what you need to work well. “The best advice I have is for readers to learn what they need to be at their best — and then try to create that structure as your own blueprint for work,” Serani said. For instance, she doesn’t mix work and play, even on her computer. “My work computer doesn’t have my personal email address or any of the fun sites, games or social networks bookmarked.” She also keeps her phone away from the office and has a mini-fridge near her workspace so she doesn’t break her concentration when needing a drink or snack.

With the help of her doctor, Serani also adjusted the time of day she takes her medication. Taking it in the morning made her tired during the workday, so she started taking it at night instead.

Borchard found that headphones and Pandora, a personalized Internet radio service, help to block out her barking dogs and other distractions. She also turns the ringer off on her office phone.

“When you live with mental illness you need to create an environment that enables you to reach your potential. Look at what is working well, pat yourself on the back and keep that momentum going,” Serani said. If something isn’t working — like Serani’s previous medication schedule — brainstorm ways you can make changes.

5. Work ahead. On the days you’re feeling well, accomplish projects ahead of schedule, so you can take time off when you need it, Borchard said. “I always tried to have a few blog posts ready to publish in case I couldn’t write for a couple of days,” she said.

6. Keep stress at bay. “Research tells us that stress overload not only intensifies symptoms of mental illness, but can trigger relapses in individuals who are symptom-free,” Serani said. Not surprisingly, this also affects your ability to work.

Keeping stress at bay means taking extra good care of yourself, Serani said. She pays particular attention to stress-inducing events, tries to minimize their impact and schedules time to decompress. “I generally take breaks out of the house — like a short walk, eating lunch on the patio or just resting in a pool of sunshine on the sofa in my office.” She also schedules dates with friends and family.

7. Make time for healthy practices. “I make sure that I eat well, sleep well and exercise often to help keep my mind, body and soul in synch,” Serani said. Borchard wakes up at 5 a.m. every day to swim and goes to bed at 9 p.m. Healthy habits aren’t just critical for well-being; they also help to prevent relapse.

8. Accept that you’ll have a bad day — or week. “Research shows that those who have the daily struggle of living with mental illness are prone to more self-criticism than non-mentally ill age peers,” Serani said.

Without even knowing it, you might be playing disparaging tapes in your head, which only make you feel worse. “’I can’t believe I can’t get out of bed and start my work day!’ is not only self-critical, it places undue shame and guilt into the mix,” she said.

Instead, according to Serani, you might say, “Some days are harder than others. And today I’m going to need some extra time to get out of bed — and get my mind into work mode.”

“It’s important to build a soft cushion of acceptance in the margins of your work life when you have a chronic illness, where you can regroup without guilt or shame if you’re having a particularly tough day, or as you’re bouncing back to a more grounded state,” she said. For Serani, that means not comparing her professional or personal life to anyone else’s, knowing what she needs when she’s having a rough day and staying positive about her illness.

Again, chronic mental illness is taxing. And while it’s frustrating when you can’t be as productive as you’d like, try to take it easy on yourself.

“When I was in the midst of my most severe depression, I couldn’t write at all. For almost a year,” Borchard said. “I try to remember that when I have a bad day where my brain feels like silly putty and I am not able to string two words together. I try to remember that courage isn’t doing a heroic thing, but getting up day after day and trying again.”

They may be diagnosed with complex disorders such as Autism, Asperger’s, Pervasive Developmental Disorders, Bipolar Disorder, Tourette’s, or Mental Retardation. All are challenging to identify reliably, and even more challenging to treat effectively. We can add the physical disabilities of blindness, deafness, and a multitude of serious medical disorders that strike children and significantly limit their ability to function.

Each of these disorders has books, websites, and national organizations devoted to them. Parents often know more about the specific disorder than any individual professional involved in treating the child because they devote hours to researching out all available information. The Internet has made much more available including the ability to contact other parents with similar concerns.

Yet, as I recently listened to a group of such parents share their pain and frustration, I could hear some common issues being expressed repeatedly: the need for parental support systems, the reality that in many situations nothing really works to resolve the challenges their children present, the lack of social opportunities for their children, the impact on marriage, the impact on siblings, and fears about the future.

Parent Support Groups

As I sat and listened to these parents share their painful stories, I felt particularly powerless. I had no magic solutions and rarely an idea that they hadn’t already heard from some other professional. Yet, as the meeting drew to a close they were so thankful! The process of sharing their struggles face-to-face with other parents who understood them best made a difference. Some actually exchanged phone numbers and planned to meet again.

The main plea was the need to have ongoing support groups. There was talk about the lack of respite from the 24/7 challenge of caring for these children. Finding someone to watch their child for a few hours so they could have time for personal, marital, or family activities was a universal challenge. The typical sitter lacks the skills and even if one lives near family, they too often lack the understanding or patience required to help. In fact extended family non-support was a key issue. Too often these parents are criticized by their own extended family for not being able to better manage the behavior of their child with severe special needs. The frequent result is avoiding attending family and community events.

These parents need a level of support that is difficult to give if you haven’t been in their shoes. The understanding that was shared within the group was very powerful. It was especially helpful because these parents are very isolated and despite information that may be available, still end up feeling as if their struggles are unique and represent their failures as parents.

But the emotional support and social connection was only part of the group’s value. These parents knew so much that they were terrific resources about the latest information as well as being able to share what strategies or services had proven helpful with their child. So there was a practical, informational aspect to the value of the group.

It was obvious in reflecting on this meeting that more community agencies need to commit to providing an opportunity for these focused parent support groups. Online chat rooms help but talking to other parents in a real room, especially parents who live in the area and can become a true personal connection, is essential to the coping ability of these parents.

Impact on Family

Children with severe special needs drain enormous amounts of time, energy, and money. Marital problems are reported to be present to a greater degree because of the lack of time for nurturing the marriage plus the frequent problem of parents disagreeing on what needs to be done for the child.

Another source of tension is that often one parent is more effective in managing the difficult behaviors. The reduced couple’s time is especially important because there is more that needs to be discussed and dealt with including the feelings of grief and disappointment that sometimes never get processed. The ability to learn to enjoy the positive aspects of the child and to take a more spiritual perspective about what all family members gain from having to address these challenges can only take place after having grieved the loss of what the parents had expected from that child at birth.

Sibling issues need attention. Parents and professionals alike often lose sight of the need to help siblings understand the problem that is affecting their brother or sister. Then there is the challenge of trying to reduce the jealousy that results when so much attention is focused on one child as well as the frequent limitations on doing common family activities. It is clear that siblings need an opportunity to voice their questions, concerns, and feelings.

A particularly important issue is helping them identify their negative feelings as normal and reduce the guilt that often complicates their behavior within the family and toward their sibling. Once again we are talking about the need for support groups. To learn that they are not alone in their situations and in their feelings is critical to a healthy attitude and the ability to cope. Communities need to provide these opportunities.