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.

The aptly-titled Things I Wish I’d Known: Cancer Caregivers Speak Out, by Deborah J. Cornwall, is a welcome resource for those struggling to help the people they love who have cancer.

My grandmother, mother, father, and wife all had cancer. My mother was a caregiver for both her mother and my dad; I helped with all four. My parents and wife recovered, though my dad was housebound and disabled for the remaining nine years of his life. 

Cornwall, meanwhile, has had her own experiences with cancer. Her mother-in-law died of breast cancer at a young age, and the author herself was diagnosed with breast cancer 33 years to the day after her mother-in-law’s death. Cornwall recovered. Her experience, she says, including extensive volunteer and consulting work with the American Cancer Society, led her to write this book. She contacted and interviewed many caregivers of persons with cancer, and created this guide to help them.

Cornwall does a good job describing what caregivers, as well as patients, go through, and what one can do to stay afloat during the grueling process. The caregivers in her book mention a void after death — but there is also a void after a successful outcome. You spend all your time and energy in the fight to overcome cancer and it becomes your center. When that fight is done, you are left seeking a new center. The people in this book share ways to do that, and to commit to living life to the fullest. Hearing it in the voices of the caregivers themselves is particularly powerful.

After old age and dementia, cancer is the third leading reason for caregiving. To that end, Cornwall quotes Rosalyn Carter: “There are only four kinds of people in this world: Those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”  No two experiences are the same, either—I know this from my own caregiving, and Cornwall knows it, too. “There are over 100 different types of cancer that can arise in nearly any part of the body,” she writes. Even people with the same type of cancer getting the same treatment may react very differently.

What can make things especially hard for both the patient and the caregiver is that many of those with cancer had no history of the illness in their family, Cornwall reports. Being diagnosed with the disease seems to be some kind of random event that hits out of nowhere. The caregivers she interviews include children, spouses/domestic partners, relatives, siblings, and friends. Those with cancer range in age from two to 90, with 40 different types of cancer, and the different caregiving paths Cornwall writes about last from a short four days to a long 23 years. About half of the patients of the caregivers she interviews had a successful remission and went on to live a cancer-free life.

The book approaches the daunting, unpredictable task of caregiving in a step-by-step way, with each step clearly explained and most often in the words of caregivers themselves. It covers all aspects of the journey, beginning with getting a clear diagnosis, which may not be easy. Problems can occur because of symptoms, such as fatigue, being attributed to other causes. This can be especially true when the person has no family history of cancer and also does not have any behaviors associated with increased risk. Many of the patients in this book never smoked and had been athletic. Cancer was just not something anyone would suspect.

Cornwall also writes about the person who may have a rare cancer that local physicians have not seen before. At times, she tells us, caregivers had to work hard and really push to get a correct diagnosis. “Working through the diagnostic tests and waiting for results was the hardest part for many caregivers,” she writes.

The book also provides testimony from caregivers on how they gathered information to help make informed decisions about treatment. This is crucial. There may be times when the patient is so distraught that they have difficulty making those decisions and need someone they love and trust to help. Choosing your treatment team is crucial, and Cornwall goes into detail. There are many factors to consider: experience with the type of cancer and outcomes, the chemistry you have with the medical staff, whether to go with a local hospital or a major cancer center, whether to get second opinions, and whether it is time to change physicians. Every decision potentially has life or death consequences. As Cornwall writes, caregivers learn the ins and outs of the medical system including privacy issues, legal issues in decision making, and especially how to advocate in a way that will be heard among medical staff.

For those who need resources, Cornwall lists them extensively. She cites patient navigators in hospitals, as well as many websites that give information on such things as free lodging when a treatment center is far away from home. Financial issues are covered as well, including insurance, prescription drugs, employment, and important record keeping. Cornwall also talks about creating a healing environment. A person does not need to be defined by their cancer. She provides guidance about what to say and how to be when you are with people with cancer and those who care for them. Since cancer can strike at any age, there is an extensive section on children and cancer—both when children are the patient and when they are in the family of a person with cancer.

A very important and sometimes overlooked aspect of caregiving is taking care of oneself. Caregiving stress can potentially take as many as ten years off the life of a caregiver, according to a study at the University of California. The people Cornwall interviews speak of many ways to self care. They also share how they dealt with the aftermath of the cancer, regardless of the outcome. If your loved one dies, there is the void, the grief, and sometimes visions of the one lost. But, again, there is a void even if the outcome is that the patient is cancer-free.

No matter what, being a caregiver means going on a very rocky journey — and Cornwall’s book is a thoughtful and excellent travel guide. It will give you ideas of how to cope and how, even in the darkest most frightening moments, to find your way to grace and resilience.

Things I Wish I’d Known: Cancer Caregivers Speak Out
Bardolf & Company, October, 2012
Paperback, 258 pages
$19.95

“Will you come with me to the next meeting?” Another parent has called. “Whenever I get in one of those meetings, I get overwhelmed. I get so upset by what the teacher and principal are saying that I end up not saying all I want to say. I don’t think they really do it on purpose but it seems I can’t get a word in.”

“I’ve got to get my son to a residential program. We just can’t handle his behaviors anymore. The school says it’s not their problem. Their problem is only providing an education. But my wife and I need relief. We want the school to help us find a place where his mental health issues can be managed and his behaviors can be controlled so he can actually learn something.” This dad was at the end of the proverbial rope.

Maybe one of these conversations — or a part of one — sounds familiar. Your child is having difficulty in school. Perhaps he has been diagnosed with ADHD or a learning disability. Maybe she has autism, a developmental disability or a significant behavior problem. You know your child is entitled to additional support but the school doesn’t respond as you had hoped to your requests for services. With every passing month, you know that opportunities to ameliorate the situation are being lost and the behavior may be growing worse or more entrenched. You are frustrated, upset for your child and just upset. What can you do?

While trying to manage a challenging or troubled child, we parents are somehow also expected to know how to navigate the complicated legal and social systems that could provide help. The school is often our first point of entry to getting the extra supports our child needs. But it isn’t easy. Often it’s contentious. We’re rank beginners while the school personnel have knowledge and experience from working with other families. Even when everyone is well-intended, it can feel like a conflicted situation from the start.

Tips for becoming a successful advocate:

• A little understanding goes a long way. Like everyplace else, schools are straining to stay within budgets and to stretch their money the best they can. Yes, we all understand that. But when it’s our own child who is suffering or whose learning is falling behind, it’s hard to stay compassionate. One parent I know was told by a distressed special education director, “If we send your child to a residential school, it means that we may have to let go of a kindergarten teacher next year.” It wasn’t legal or helpful for her to say it. But that doesn’t mean that it wasn’t the truth. Kids with big needs cost the community big bucks. Services for one child can mean that 20 other kids are in an overcrowded classroom. We do have to advocate well for our children, but it helps us be more collaborative when we can also appreciate the position it puts school officials in.
• Get support for yourself. Joining a parent support group or talking with other parents who have kids with special needs can be both a relief and a help. Some of those parents are way ahead of you in the process. They know the ropes. They can provide you with important factual information and they can give you emotional support when you need it. Many communities also have volunteer and professional advocates who can explain the law to you and go with you to meetings to make sure you get heard and that the school responds as it should. If it’s a paid service, consider whether some money spent now can prevent higher-cost legal help later.
• Know your child’s rights. It’s very important to be conversant with your state’s education laws and the policies of the local school system. That way you won’t waste people’s time by asking for things that you aren’t entitled to. You will be taken more seriously by administrators if you have taken the time to learn and understand what you have to work with.
• Always prepare for meetings. Take along a list of talking points and questions. Your time is valuable. So is the time of the people convened to meet with you. You want to use the time you have as best as you can.
• Always take your partner or a friend with you to meetings. Often there are six or more professionals arrayed around the table. It can be daunting. It’s very difficult to take in everything that is said in a meeting when you are emotionally invested. When you have an ally with you, it’s easier to stay focused and to make sure you cover everything you want to cover.
• Leave younger children at home. Small children aren’t always cooperative when parents need to be focused. If you can’t afford a sitter, ask a neighbor or relative for a child care swap. If you really, truly can’t find someone to take care of your younger child, make sure you bring a snack and something to keep the child busy while you talk.
• Work with the school personnel, not against them. That means being open-minded as they try to find ways to meet both your child’s needs and the needs of the other children they serve. Sometimes there are creative, less expensive ways to provide support beside adding staff or sending a child to an out-of-school placement. Interns from local colleges, some parent participation, or in-home support are options that should at least be explored. There is usually more than one way to help a child be successful.
• Keep your cool. It is never helpful to approach with anger and threats people who have something we need. It only makes the other person defensive and resistant. Keep your sense of humor. If you find yourself reaching the boiling point, end the phone call or meeting before you say something you’ll regret or that may backfire on your child. You don’t want to have school personnel running for cover when you want to talk to them. You want their willing participation in solving your child’s problem.
• When following up, don’t wear out your welcome. Yes, you do need to have regular contact about how your child is doing and whether supports are in place. But if you attempt to micro-manage, school personnel are going to become “deaf” to your requests. Keep calls to a minimum. Always have a clear idea of what you want to accomplish before you call or ask for a meeting. School staff are legitimately busy with often a dozen or more other parents who have equally compelling needs.

Unfortunately, this is a common occurrence for those with obsessive-compulsive disorder (OCD), and often becomes a vicious cycle. OCD isolates the sufferer, and this detachment from others, where the person suffering from OCD is left alone with nothing but his or her obsessions and compulsions, can exacerbate OCD.

In Dan’s case, many of his obsessions revolved around him causing harm to those he cares about. What better way to prevent this from happening than by avoiding friends and family? And this is exactly what he did. Even though in reality he could not even hurt a fly, in his mind the “safest” thing to do was to stay away from everyone. This is just one example of how OCD steals what’s most important to you.

Another common example is those OCD sufferers who have issues with germs. Avoiding any place or person that might carry germs (so pretty much everyone and everything) is about as isolating as you can get. Or maybe they are not even worried about getting sick themselves but rather are terrified they might contaminate others.

There are many other reasons why OCD sufferers might isolate themselves. Their compulsions might be so time-consuming that there is simply no time to interact with others; OCD has taken up every second of their lives. Or perhaps it is just too exhausting to be out in public, pretending everything is okay.

Let’s also not forget the stigma that is still associated with the disorder. Many with OCD live with the fear of being “found out.” How can they best prevent that from happening? Yup — they isolate themselves.

When someone is suffering deeply, whether it is with OCD, depression, or any illness, support from friends and family is crucial. Friends who reach out to the isolated person often are ignored, and after a while, they might stop trying.

This is what happened to Dan. I have no doubt his friends genuinely cared for him, but they didn’t realize the extent of his suffering, because Dan never let on. When their efforts to connect with him were rebuffed, they, not knowing what else to do, left him alone.

In some situations — college, for example — friends are the first ones to notice another friend’s isolation. Young people need to be made aware that withdrawal from others might be a serious cause for concern, and help should be sought.

OCD sufferers can isolate themselves from family as well. When Dan’s OCD was severe, we felt separated from him, even when he was living with us. He kept to himself and would not engage in conversation. He seemed as if he was in his own world, which in many ways he was: a world dictated by OCD. As difficult as it was to connect with him, our family never stopped trying, but it was mostly a one-sided effort. It wasn’t Dan’s fault that he couldn’t communicate with us, and it wasn’t our fault that we couldn’t get through to him. This insidious disease, OCD, was to blame.

While the Internet cannot take the place of face-to-face interaction, I do believe that social media sites have the potential to lessen the feelings of isolation that OCD sufferers feel. Connecting with others on forums, or even just reading about people who are suffering as they are, can help reduce loneliness, and in the best-case scenario, prompt those with OCD to seek appropriate help.

When those with OCD, or any mental illness, cut off those who care about them, they lose their lifeline. The support, encouragement and hope that are all so important for recovery no longer exists. I find this heartbreaking, as I truly believe the more we are pushed away, the more likely it is we are needed. This is something we should all be acutely aware of, and if we find ourselves or our loved ones becoming increasingly isolated, we should seek professional help immediately.

Somebody, somewhere, declared April to be Autism Awareness Month. I’m all for it. We need to be more aware of it so that children are diagnosed early and accurately to make sure that they get the treatment they need.

What is Autism?

Autism is a neurological disorder that usually becomes apparent by the age of 3 if people know what to look for. Part of the problem in diagnosing autism is the wide range of possible behaviors and abilities. However, there is usually a distinct pattern of significant impairment in three major areas:

• Impairment in reciprocal social interaction. Children who are on the autism spectrum don’t get the give and take of conversation and sharing of experience. Even when very little, neurotypical kids will point to things that interest them so that others will see it too. They will babble back and forth, imitating conversation. Autistic kids seem to be in their own world, uninterested in sharing it with others or unable to understand that other people aren’t as interested as they are in their obsession of the moment. Higher-functioning kids with autism may come off as rude, clueless, or self-centered because of their apparent inability to read what is socially appropriate at any given time.
• Impairment in communication skills. Their language may be unusual, stilted, or limited. High-functioning kids on the spectrum may have large vocabularies but may use words incorrectly or idiosyncratically. Lower-functioning kids may not speak at all.
• Presence of stereotyped behaviors, interests, and activities.Spinning, flapping, and finger-flicking are common in young kids and even in some autistic adults. Many rock to comfort themselves. Children may develop an intense obsessive interest in just about anything. I’ve known kids who are walking encyclopedias about pirates or fishing or who know every detail of every one of the Star Wars movies. They can talk for hours about their “thing” but are unable to have even a brief conversation about almost anything else.Some of the more disabled kids with autism I’ve known have been obsessed with things such as different kinds of tires, ceiling fans or string. They are happiest when they can watch or play with their particular interest. High-functioning autistic adults may become experts in arcane academic or technical areas, again to the exclusion of almost everything else.

  In addition, many of these children show sensory processing disorders. They can be intensely over- or under-sensitive to sensory stimulation (lights, sounds, smells, or touch). Some are unable to stand the buzz of fluorescent lights or the smell of certain foods, the sensation of certain fabrics or changes in temperature, to name only a few examples. Some have a very high tolerance for pain. (A school program called me recently because a teenaged girl seemed to feel no pain when she pulled off fingernails.) Some can’t manage any discomfort at all. I know one preschooler who walks on tip-toe whenever he is barefoot because he can’t tolerate how grit feels on his feet.

Autism is associated with a known medical condition in only 10 to 20 percent of cases. It is thought to be genetic since 60 to 90 percent of identical twins both have it while in fraternal twins it is less than 5 percent. As yet, there is no genetic test or brain scan or medical test to use for diagnosis. We rely on observation and the experience of professionals.

Why Does the Prevalence Rate Keep Growing?

In my professional lifetime, the odds of a child having autism have kept growing. In the 1970s, the statistic worldwide was 4 in 10,000. Between 1985-1995, the number tripled to 12 in 10,000. The rate was estimated to be 1 in 155 by 2002; 1 in 110 in 2006 and 1 in 88 in 2008. Some studies are now suggesting that it afflicts 1 in 50 kids in the U.S.

What happened? Partly it’s about a change in the acceptance of autism as a genuine, distinct disorder. Partly it’s due to a change over time in the description of criteria and the number of criteria that need to be met to make a diagnosis.

When I was in graduate school in the early 1970s, we were using the DSM-II. Autism isn’t mentioned except as a subset of childhood schizophrenia. Frankly, back then, I’d never heard of it. When DSM-III came along in 1980, a section on infantile autism was added and the first effort was made to delineate criteria. It took until the DSM-IIIR in 1987 for autism disorder to appear with a well-articulated set of 16 criteria, 8 of which had to be present to warrant a diagnosis. By the time the DSM-IV (1994) and DSM-IVR (2000) came out, the number of criteria had been reduced to 12, with 6 being needed for a diagnosis. With each succeeding edition, mental health professionals became more aware of autism as a possible diagnosis.

At least some of the increase in prevalence is due to that awareness on the part of professionals. Some of it is probably because kids who at one time might have been diagnosed with psychosis or retardation or hyperactivity are now being assigned the diagnosis of autism. And some of it is due to the fact that parents and teachers have become much more attuned to the possibility that a child is on the autism spectrum, so evaluations are occurring at a much earlier age. Finally, it’s possible that there is something going on in our environment or in genetics that is causing an increase in the disorder. That last one remains a mystery.

What if You Suspect Your Child Has Autism?

With the increase in autism prevalence and awareness has come an increased sophistication in screening. A diagnosis of autism is rarely assigned before 15 to 18 months of age. If by then you suspect that your child isn’t developing as he or she should, you can first go to one of the many websites that have quizzes and checklists for the symptoms of autism for the age of your child. But please don’t go on the results of those websites alone. There are many reasons why a child may not be keeping up with peers. It’s just a good, if crude, first effort.

The next step is to ask your pediatrician to take a look at your web-based checklists and to decide if a referral to an autism screening team is advisable. There are early childhood interventions (EI) teams all over the U.S. who can make a more refined diagnosis and who can offer treatment if it is needed. If there is no EI team nearby, there is probably a diagnostic team in a mental health clinic or children’s hospital near you. An accurate diagnosis is essential. Diagnosis is what determines what types of treat may be the most helpful for your child.

Early Intervention Matters

There is no cure for autism but when children get intense and appropriate treatment early on, preferably before age 3, many can and do learn compensatory skills. Excellent programs provide physical, occupational and speech therapy as well as coaching in social and language skills for the child. They also provide coaching and support for parents so they can reinforce and continue the treatment at home. If there is no comprehensive program nearby, there is often a resource center connected with a school or with a medical center that can help families get the services the child needs.

However, after reading Melissa Francis’s memoir, Diary of a Stage Mother’s Daughter, I believe Mommy Dearest may have met her match in Francis’s mother.

Francis’s career as an actress started when she was barely a toddler. From that point forward, she writes, much of her time was spent rushed to auditions, memorizing lines, and shooting commercials and TV shows. Francis made her mark on television when she landed the role as Cassandra on the popular show Little House on the Prairie. In her memoir, she relates stories and memories from her time on sets with great clarity. What is most impressive is her ability to capture the thought processes that she had in various moments, as well as her childhood innocence and naivety.

However, the real story in this book is the outrageousness of her mother. Unpredictable at best, Francis’s mother was at times sweet and spoiling while at other times downright devious and frightening. It quickly becomes apparent that the sweet and spoiling side of this Mother Dearest came when she needed Melissa to act the part in a commercial or television episode.

When she wanted something from her daughters, she was not afraid to use bribery. But the second someone crossed her, they were punished, and she doled out these punishments in a variety of formats. It could be scathing words, being locked out of the house in only a bra and jeans, being shoved out of the car to walk home—even being pushed down the stairs. The author or her older sister, Tiffany, experienced each at various times.

One of the best examples of how this behavior reached out beyond the family involved another family in the Francis’s neighborhood. The Parkers lived a few doors away, and reported the Francis family to animal control due to feral cats in the area. Animal control picked up the Francis family dog, KC. The author’s mother decided to have revenge. She drove to the Parker household and returned home a while later. When the author confronted her, she saw that her mother had taken the Parker’s dog’s collar. Her mother replied, “It’s Coco’s. The Parkers’ dog. I took her in my car, and drove her out to the pound in Simi Valley. And I turned her in. A lost dog. Like KC.”

The weight of this was not lost on Francis: Since Coco did not have her collar, and the pound that she was dropped off at was far from their home, the Parkers would never find their pet. “Mom had effectively murdered our neighbors’ dog,” she writes.

As the years roll by, the impact of her mother’s behavior becomes more apparent. Tiffany leaves for college and continues a destructive path that started when she was a teenager. She uses alcohol and drugs and, unfortunately, 16-year-old Francis, our memoirist, is a witness to this behavior. Mother Francis continues with her antics after Tiffany leaves the house, but now, rather than sharing that burden with Tiffany, the author is left to fend for herself.

She begins planning her escape from the home, plotting a way to get to Stanford summer school. At this point, you may be wondering where the author’s father is. He was there, but just barely, Francis tells us. Rather than assist in the dramatics and try to curb the chaos, he hid away in his study or at work, avoiding the wrath of his wife and laughing it off as though it were a minor flaw.

The family could not turn a blind eye to Mother Francis’s behavior forever, though. After the author got married, her sister Tiffany’s health took a serious turn. Her pancreas had been destroyed by her drug and alcohol abuse, which was only discovered after a couple rounds of rehab. The problem seemed to awaken Father Francis from his stupor, and he immediately took action to take care of Tiffany. Mother Francis, on the other hand, seemed to find Tiffany’s condition more of an inconvenience than something to be truly worried about. After one of Tiffany’s nights in the hospital, the author recalls, the two sisters were talking in the car. Tiffany wiped tears from her eyes and said,

“You know, I was lying in the hospital last time and in the middle of the night I was just in so much pain. And… so scared. All I could think was, it would be so nice to have a mom.”

This seems to be the final straw for Francis. She confronts her mother and ends the conversation with these words: “All the craziness. It ends with me. I swear it, once and for all. One way or the other. It’s your choice how it ends. But it ends with me.”

Such a powerful moment in the book: I silently cheered and presented Francis with a standing ovation.

And Francis’s book is worth cheering for, too. I absolutely love reading memoirs. When an author writes one with raw honesty, great style, and a narrative that holds you every second, she creates a real treasure. Francis’s is a great example — I could not put it down. At times, I wanted to reach in and comfort young Melissa and Tiffany. Other times, I wanted to reach in and teach Mother Francis a lesson or two. All in all, Diary of a Stage Mother’s Daughter is a solid, gripping read.

Diary of a Stage Mother’s Daughter
Weinstein Books, November, 2012
Hardcover, 304 pages
$26

While the above questions are obvious appeals, they are not the only way that OCD sufferers seek reassurance. Indeed, the very nature of OCD centers around making certain that all is well. The disorder is characterized by unreasonable thoughts and fears (obsessions) that lead the sufferer to engage in repetitive thoughts or behaviors (compulsions). Obsessions are always unwanted and cause varying degrees of stress and anxiety, and compulsions temporarily alleviate these feelings. Compulsions are always, in some way, shape, or form, a quest for reassurance; a way to make everything okay.

A good example is the case of someone with OCD who is obsessed with a fire starting because he or she left the stove on. The compulsion of continually checking the stove is a recurring attempt to reassure oneself that the stove is indeed off and nobody will get hurt. Another OCD sufferer may fear germs (obsession) and wash his or her hands until they are raw (compulsion). The compulsion of hand-washing is an effort to make sure that his or her hands are clean enough so that there will be no germs.

My son Dan suffered from OCD for a few years before we even knew anything was really wrong. In retrospect, I realize he had a lot of reassurance-seeking behaviors. While he never asked the “Are you sure?” questions, he would often apologize for things that did not warrant an apology. If we went to the supermarket together he would say, “Sorry I spent so much money,” when, in fact, he had only picked out a few items. I, in turn, would reassure him that he hadn’t spent much at all. Dan would also thank me over and over again for things that most people might say “thank you” for only once, if that. Again, I would reassure him by saying, “You don’t have to thank me,” or “Stop thanking me already.” My responses to Dan in these cases gave him the reassurance he needed to feel certain that he hadn’t done anything wrong, had behaved appropriately, and all was well.

Of course hindsight is a wonderful thing and I now know that how I reacted to Dan at these times was actually classic enabling. I did him more harm than good. My reassuring Dan that all was well reinforced his misconception that he had to be certain, to have no doubt at all in his mind. While I helped reduce his anxiety at the moment, I was actually fueling the vicious cycle of OCD, because reassurance is addictive. Psychotherapist Jon Hershfield says:

If reassurance were a substance, it would be considered right up there with crack cocaine. One is never enough, a few makes you want more, tolerance is constantly on the rise, and withdrawal hurts. In other words, people with OCD and related conditions who compulsively seek reassurance get a quick fix, but actually worsen their discomfort in the long term.

So how can those with OCD “kick the habit?” It’s not easy, as sufferers continually wrestle with the feeling of incompleteness, never truly convinced that their task has been completed. There is always doubt.

But there is also always hope. Exposure Response Prevention (ERP) Therapy involves facing one’s fears and then avoiding engaging in compulsions. Using the stove example again, the sufferer would actually cook something on the stove and then shut the burner(s) off. He or she would then refrain from checking the stove to make sure it was off. No reassurance allowed. This is incredibly anxiety-provoking initially, but with time it gets easier. And while it is difficult to watch a loved one go through “withdrawal” it is imperative that family members and friends learn how not to accommodate or enable the sufferer.

Without reassurance, how will those with OCD achieve that need for certainty that they so desperately desire? Indeed, how can all of us make sure that nothing will ever go wrong? How can we control our lives, and the lives of those we love, so that nothing bad will ever happen?

The answer, of course, is that we can’t. Because as much as we’d all like to believe otherwise, much of what happens in our lives is beyond our control. Through ERP therapy, OCD sufferers will focus on the question “How can I live with uncertainty?” as opposed to “How can I be certain?” And instead of dwelling on the uncertainties of the past and the future, those with OCD can begin to live life to the fullest by concentrating on what matters most – the present.

“I’m caught between my mother and my wife,” says a 25-year-old man in Boston. –“ My Chinese mother expects my wife to obey her and wait on her when she visits, just as she did for her mother-in-law. My American wife works all day and doesn’t see why my mother can’t start dinner or help out when she visits. My mother constantly complains. My wife cries. What do I do?”

A young man in Florida writes: “My wife is Latina and I’m white. My father goes on and on about illegal immigration whenever we visit. My mother can’t shut him up. My wife tries to smile through it. We fight when we get home because she says I should stop him but I know nothing I can say is going to change him. Help!”

“My boyfriend and I want to marry but we’re from different ethnic groups and we know our parents will never agree. We’ve been secretly seeing each other for 4 years now.” –- from a young woman in Serbia.

Like the writers of these letters, you’re in love. Like them, you want your parents to love and admire the person you’ve chosen. Instead, they can’t see past their own traditions, values, or prejudices. They don’t see your sweetheart or spouse for the wonderful person he or she is. All they see is something Wrong – with a capital W. You feel caught between them. You love and, yes, respect your parents but you also love and admire your partner.

Bridging the divide is important. If you and the person you love aren’t clear about your commitment and the compromises you are willing to make to be together, the constant disapproval, whether stated or seething under the surface, can undermine your relationship. The child of the disapproving parents is caught in a terrible bind. Listening to and responding to either side makes the other feel abandoned, unloved or disrespected. The partner who is the focus of dislike may feel constantly under pressure to prove her or himself to be worthy. If unrewarded, the efforts can soon turn to resentment and anger that spills into the relationship.

Fortunately, there are less drastic solutions than the romantic death scene in Romeo and Juliet. Like Tevye in Fiddler or Robert in Downton Abbey, there are parents who eventually accept their adult children’s choices and even give their blessing. But it takes work and willingness. It doesn’t happen by magic or by argument.

Don’ts and Dos for closing the gap:

1. Don’t meet criticism with criticism.Your parents’ values, traditions, and feelings have helped make you who you are. They have been the guiding light for perhaps generations and have been central to your family’s identity. Putting down your family history isn’t honest or helpful.Do be compassionate. The older generation clings to their attitudes and opinions because it helps them feel safe in a changing world. Their intentions are probably good. Find ways to reassure your family of origin that you appreciate and honor your past while you are also becoming part of the global community that includes people from other walks of life.
2. Don’t meet parental disapproval with defensiveness and argument.Defensiveness implies that there is something to defend. Arguing implies you can be argued out of it.Do respond to their concerns with respect and clarity. Acknowledge that a cross-cultural marriage is going to be difficult. Express your sadness that they feel the way they do. Affirm your love for them and your general respect for their opinions but be clear that you have made your decision. Quiet certainly is far more effective than angry words.
3. Don’t keep your relationship a secret.Keeping it secret suggests you are ashamed of your choice. Someone will inevitably find out, which will make everyone else in the family angry and upset with you both.Do make sure both of you agree about compromises in order to be together. Make sure you are sure. There is no point in confronting your parents with something that isn’t going to last.
4. Don’t use your partnerto make a political point, to educate your parents, or to give yourself an ally. It’s not fair to the person who loves you to be used as a pawn in an ongoing fight you are having with your parents about such things as religion, race, or status. It may feel good to have a supporter in the battle but “us against them” isn’t enough of a basis for a lasting relationship.Do be clear about your own motives. Make sure you love the person for who he or she is in their entirety, not because you like the drama of choosing someone who has a significantly different family background.
5. Don’t take a side – your lover’s or your mother’s. This isn’t about winning and losing. It’s about reconstructing everyone’s idea of family.Do your best to negotiate compromises, understanding, or at least respectful disagreement. When you have to turn down someone’s demands or requests, be clear that it doesn’t mean that you don’t love them. It means that it doesn’t fit with the kind of family you want to make.

As our world becomes smaller through social media and increased ease of travel, more and more people are finding themselves in love with someone their parents never considered as a suitable mate. It’s hard on everyone. If people dig in their heels, the consequences can be terribly hurtful and long-lasting.

Bend when you can, just because it’s easier for the younger generation to bend a bit as people get to know each other. However, the painful bottom line is this: If your parents persist in not accepting the situation, your first loyalty is to your partner. This is the person you have chosen to make a life with. Even if your parents threaten never to see you again, to treat you as dead, or to cut you out of the will, loving your partner means living with those consequences. If you’re not prepared to do that, it’s only fair to your partner and to yourself to end the relationship.

Hopefully, it won’t come to that. Parents usually don’t want to lose you any more than you want to lose them. Hopefully, when your parents see that you are committed to the person you love and the life you have chosen, they, like Tevye in Fiddler and Robert in Downton, will come around.

Stop! Before you reserve the moving truck or buy the ring, take the time to discuss the issues that can make or break your relationship. Love really isn’t enough. Once the pheromones calm down, once you get over the intoxicating time of new love, how you handle these topics will decide whether you will have lasting love. It’s essential that you are on the same page, or at least in the same chapter, when it comes to your feelings or convictions about each one.

Fidelity. Do you have a common understanding of what being faithful means? What would each of you consider to be “cheating”? Is it okay with you if your partner has friends of the other gender? Where is the line between being a friend to others and doing things that will jeopardize your relationship?

Sex. Few couples keep up the frequency and intensity of new-love sex. What is a comfortable rhythm for each of you? When and how and how often do you like to have sex? If you like it in the evening and your partner only wants it in the morning, it can be trouble. How adventuresome or athletic are you each willing to be? How generous are you in satisfying each other?

Money. This is even harder for many couples to talk about than fidelity and sex. What are your attitudes about who should provide for the family? Who should pay the bills? Do you have similar ideas about what should be mine, yours, and ours? Have you been honest about any debts that you are bringing into the relationship? Are you on the same page about how money is spent and how much should be saved? Who is going to take responsibility for such things as insurance, taxes, and retirement accounts?

Work. What is the role of work in each of your lives? Are you in agreement about how hard each of you should work and the choices you should each make about bringing in the money? If one or both of you is in a high-powered career, what are you each willing to sacrifice to make it possible? If one of you out-earns the other, does it matter in terms of decision-making? Will the agreement change if you have children?

Leisure time. What are your ideas about how much of your leisure time you spend together and how much you spend with your individual friends? Is it okay with each of you for the other to go out for a guys’ or girls’ night out? Do you have strong feelings about what can happen then? What do you like to do together that will ensure that you will continue to have some fun as a couple?

Health and fitness. Related to the use of leisure time is how you each regard the importance of the basics: getting enough sleep, eating well, getting in some exercise as part of your routine. Are you in agreement about bedtime and about nutritional choices? Are you supportive of each other in building activity into your lives? Do you have similar views about getting to the dentist and routine doctor visits?

Social media and gaming. What is the place of video gaming, texting, and computer surfing and chatting in your lives? Do either of you have strong feelings that some sites or games aren’t appropriate? How much time can be devoted to gaming and screen time before it becomes a threat to your relationship?

Church, charity and volunteering. Do you share religious or spiritual beliefs? If not, do you respect each other’s? If you have children, will there be issues about which religion they will be raised in? Do you agree about how much time and money should go to charitable work and volunteering to better your community?

Kids. Are you on the same page about having children? If you are going to have kids, do you have similar ideas about when and how many? How about discipline? Do you share an approach to child-rearing? And how will you each distribute time for childcare, carpools, kid activities, and family time?

Relationships with in-laws. How much time do you think you should spend with relatives? What occasions are non-negotiable events for each family? Where do you set your boundaries? Are relatives welcome to drop in any time they please or do they need to have an engraved invitation three months in advance to visit you?

Chores. Arguments about who cleans what have pulled many couples apart. Do you have similar ideas about who should do the laundry, the food shopping, the cooking, the cleanup after dinner, and the general straightening up of the house? Who is supposed to take care of the trash, the yard, the snow shoveling? It’s easy to fall into stereotypical roles that neither person likes. Do you have shared standards for how clean is clean enough?

Partying. Are you in agreement about the use of alcohol and recreational drugs? Gambling may also fit into this category. How much, if any, is okay? When do you think someone has crossed the line and it is a problem? What will you do if that happens?

Conflict. How do you each handle conflict? Do you have the tools you need to negotiate differences? Do you avoid conflict? Blow up? Stomp off? How should your partner handle it when you are upset or angry?

Planning for the future. As heady as the present may be, if your relationship is to last, the two of you also need to be on the same page about where you think you are headed. Do you have similar goals? Are you mutually committed to those goals? Of course, goals may evolve and change but it’s important to have some idea of what you both hope for the future.

Don’t assume that of course you and your true love are in agreement just because you are in love. Once the wonderful haze of new love settles into daily loving, these are the issues that can become deal breakers. Better to talk about them before making a commitment than to find yourselves astonished, angry, and saddened by huge differences that can’t be resolved. Serious discussion now can prevent a painful breakup later. Even more important, conversations about these issues can help you get to know each other better and to lay down a united and strong foundation for your relationship.

Over the years I’ve chatted with some OCD sufferers about the reverse perspective: how young adult (and even “older” adult) children with OCD can help their parents understand what is going on with them. These discussions have led me to a simple conclusion: It’s not easy.

Every parent-child connection is unique, with its own set of issues. Even in the best of relationships, parents will likely “mess up” and say or do the wrong things at times. I still cringe every time I think of the first thing I said to my son Dan when he told me he had OCD: “Are you sure, Dan? You never even wash your hands.”

While I meant well, I basically had no idea what I was talking about. OCD is not about washing your hands. Another common reaction from parents is to minimize their child’s suffering with the hope of making them feel better. “Oh, I do that too,” or “That’s no big deal,” might be comments from parents when their child shares symptoms of his or her OCD.

This type of reaction can be devastating for the OCD sufferer who desperately needs to be taken seriously.

I’m sure my comment about handwashing only solidified what Dan already suspected: His mother needed help. It was important that I become educated about OCD. So he handed me a book to read which gave me an inkling of what he was experiencing. It was a smart move on his part, and one I’d recommend to adult children who want to help their parents understand their OCD. Educate them any way you can. Give them a book, point them to a website, direct them to a support group, have a conversation.

I know, that last one is tough. I suggest talking with your parents during a calm, uneventful time, preferably when everyone is in a good mood. You might begin by telling them how much you appreciate their support and love (assuming you are getting that from them), and then bring up the issues you feel need addressing. Maybe they have preconceived notions about OCD that just aren’t true. Maybe they are saying things, or acting in ways that are hurtful to you. I know I always appreciated it when Dan set me straight or voiced his opinions. He was able to help me see things from his viewpoint, which is not always easy for parents to do. I wish he had spoken up even more.

I don’t believe I’m alone in saying that guilt is one of the strongest emotions parents feel when they find out their child has mental health problems. Somehow it is our fault. It isn’t important whether this is true; we believe it. Guilt also has the potential to work both ways. In some cases, it might make the issues harder to address, as parents would rather sweep it all under the rug and just pretend everything is fine. In other situations, feelings of blame might spur a desire really to understand what you think you’ve done to your child, so you can (hopefully) remedy it.

To complicate things more, OCD sometimes runs in families. Having dealt with it previously probably will affect family members’ perceptions. For example, if your family has had a “just snap out of it” mentality, that might be exactly what they will expect you to do. Of course, this isn’t possible.

Sometimes a conversation with parents, for so many different reasons, is just not going to happen. Maybe it’s too hard for you to talk about your OCD. Maybe you are not on speaking terms, are dealing with a strained relationship, or just don’t see eye to eye. In these cases, maybe it’s best just to agree to disagree. We can only change our own behaviors, and those with OCD need a lot of strength to work toward recovery. Expending energy trying to change others rarely, if ever, works.

All of us, especially those who are suffering, just want to be heard, understood, and accepted by those we love the most. If you are not getting what you need from your parents, hopefully other family members, friends, and loved ones will step in and fill the void. Support from those who care about you will surely help as you move forward in your fight against obsessive-compulsive disorder.

I’m just getting to know Michelle. She had her first baby 3 weeks ago and has been sad and irritable ever since. Her pediatrician was worried about her at the well-baby visit this week and sent her to me. She’d had a tough pregnancy (morning sickness that wouldn’t quit for what felt to her like forever), made tougher by the financial stress that came from her husband being out of work for several months. The doctor is worried that she and her baby aren’t getting off to a good start.

Sadly, moms like Michelle often feel alone and guilty. Not feeling what they think they are supposed to feel, they are embarrassed to admit to themselves and others that things aren’t going well. Just when they need help the most, many don’t reach out. Some start to resent their babies and begrudge them time and attention. They force themselves to do what needs to be done but don’t provide their newborns with the nurturing they need.

Still others give up on nursing, or holding their babies when bottle feeding, depriving themselves and their babies with the closeness that comes with the quiet feeding times. Propping a bottle is the best they can do. Overtired, irritable, and sinking into depression, life after birth isn’t at all what they expected.

As hormones shift and settle, it’s absolutely normal to feel what is commonly known as the baby blues in the weeks following birth. One of my clients described the first couple of weeks after her first child was born as PMS times ten. Others feel more emotionally fragile than usual and maybe a little weepy. Still others are surprised that they are on an emotional roller coaster, feeling great one minute and set off into tears by something that normally wouldn’t bother them the next. It’s all because the endorphins from delivery are leaving the new mother’s system and the body is resetting itself.

Different women react differently but normal baby blues are usually accompanied by moments of joy and wonder and happiness about the baby and motherhood. The emotions settle down after a couple of weeks and the routines and rhythms of new parenting get established.

But when those up and downs last more than a few weeks, and especially if they get worse, it may indicate that the new mom is developing postpartum depression (PPD). This happens to between 11 and 18 percent of new mothers, according to a 2010 survey by the Centers for Disease Control (CDC). Surprisingly, it can last anywhere from a couple of months to a couple of years.

Symptoms of Postpartum Depression

Postpartum depression looks like any major depression. Things that once gave the mother pleasure are no longer fun or interesting. She has trouble concentrating and making decisions. There are disturbances in sleep, appetite, and sexual interest. In some cases, there are thoughts of suicide. Many report feeling disconnected from their baby and some worry that they will hurt their baby. Feelings of hopelessness, helplessness and worthlessness immobilize them. Many feel guilty that they can’t love their child, which makes them feel even more inadequate.

In some cases, women develop psychotic delusions, thinking their baby is possessed or has special and frightening powers. Sadly, in some cases, the psychosis includes command hallucinations to kill the child.

Who Develops Postpartum Depression?

There are a number of issues that contribute to a woman’s risk of developing PPD:

• A prior diagnosis of major depression. Up to 30 percent of women who have had an episode of major depression also develop PPD.
• Having a relative who has ever had major depression or PDD seems to be a contributing factor.
• Lack of education about what to realistically expect of herself or the baby. Teen mothers who idealized what it would mean to have a baby to love with little appreciation for the work involved are especially vulnerable.
• Lack of an adequate support system. Unable to turn to someone for practical help or emotional support, a vulnerable new mom can become easily overwhelmed.
• A pregnancy or birth that had complications, especially if mother and baby had to be separated after the birth in order for one or the other to recover. This can get in the way of normal mother-child bonding.
• Being under unusual stress already. New mothers who are also dealing with financial stress, a shaky relationship with the baby’s dad, family problems, or isolation are more vulnerable.
• Multiple births. The demands of multiple babies are overwhelming even with substantial support.
• Having a miscarriage or stillbirth. The normal grieving of loss is made worse by the shifting hormones.

What to Do

In cases of the normal “baby blues,” often all a new mom needs is reassurance and some more practical help. Engaging the dad to be more helpful, joining a support group for new parents, or finding other sources of support so the mom can get some rest and develop more confidence in her mothering instincts and skills can put things back on track. As with any other stressful or demanding situation, new parenthood goes better when the parents are eating right, getting enough sleep, and getting some exercise. Friends and family can help by bringing some dinners, offering to take over with the baby for an hour or so so that the parents can get a nap, or by babysitting siblings to give the parents time to focus on the infant without feeling guilty or pulled in multiple directions.

Postpartum depression, however, is a serious condition that requires more than naps and caring attention. If the problem has persisted beyond a few weeks and has been unresponsive to support and help, the mother should first be evaluated for a medical condition. Sometimes a vitamin deficiency or another undiagnosed problem is a contributing factor.

If she is medically okay, those who care about her and her baby need to encourage her to get some counseling, both for the emotional support counseling offers and for some practical advice. Cognitive-behavioral treatment seems to be especially helpful. Since women who have experienced postpartum depression are vulnerable to having another episode of depression in their lives, it is wise to establish a relationship with a mental health counselor to make it easier to seek help if it is needed in the future. If the mom has had thoughts of suicide or infanticide, the therapist can help the family learn how to protect them both. If the birthing center or hospital offers a PPD support group, the new mom and dad should be encouraged to try it. Finally, sometimes psychotropic medications are indicated to alleviate the depression.

The baby blues are uncomfortable. Postpartum depression is serious. In either case, a new mom deserves to get practical help from family and friends. When that alone doesn’t help a new mom adjust, it’s time to seek out professional help as well.

Neurobiology of Breaking Habits

Self-destructive behavior patterns, such as addictions, are hard to break because they provide immediate relief. But their aftermath makes people defeated and ashamed, requiring more relief, and the cycle continues. These habitual, compulsive behavior patterns limit new learning and connections in the brain by obstructing opportunities to experience the positive rewards from sustainable, effective coping strategies.

Kaitlyn, 17, was bright, vibrant and charismatic. She was adopted at birth (and knew this all along), then struggled from early childhood with both epilepsy and an unbearable sense of psychological pain and inner isolation she could not articulate.

Kaitlyn’s shame and sense of herself as unlovable had its origins in feeling unwanted and abandoned. She was naturally outspoken, gregarious and likable, but developed an early pattern of self-consciousness and inhibition with peers, driven by fear of rejection. She learned to act according to what she thought friends and boys wanted – anxious to be liked and secure her relationships.

Shame, Rage and Self-Harm

Kaitlyn had a history of self-harm, typically provoked by real or imagined rejection. She harbored a secret fantasy of being hurt and then rescued, and impulses to make her pain visible and have it validated by others. This dynamic was an unconscious attempt to manage overpowering feelings. It brought others close enough so she wasn’t alone, while reassuring her she was still loved.

Shame is a terrible feeling of badness associated with wanting to hide one’s head and disappear. Kaitlyn’s feeling of shame and badness was fueled by episodes of rage at home, confirming her fear that she was a “monster” who drove people away and didn’t deserve love and happiness. Rage can be a defense against intolerable shame, when shame turns into blame and is projected onto others. In this way, the bad feeling is passed on like a hot potato, providing temporary respite from feeing terrible, but propelling the cycle of shame and self-destructive behavior.

Self-Fulfilling Prophecy and Self-Sabotage

Shame-based self-perceptions that are acted out through self-destructive fantasies and behavior create a self-fulfilling prophecy, providing rigged evidence of badness. Feelings such as worthlessness, badness, and inferiority have various origins in early experience when we are developing a sense of self. These feelings may later be experienced as factual — as if they represent the truth about who we are. When such compartmentalized experiences of oneself remain secret and unarticulated they can lead to unconscious pressure to make this inner “truth” a reality, leading to self-sabotage.

Dysfunctional behavior patterns are habits with psychological, often unconscious, motives. Breaking them requires insight into what function they serve and the discipline to stop them. It also requires courage and initiative to try out new behaviors and allow a different chain of events to occur. On a neurobehavioral level, new behaviors that generate positive feedback create new pathways in the brain, allowing momentum for psychological growth and change.

Kaitlyn had been caught in waves of powerful feelings and a difficult cycle of self-defeating patterns. But she wanted more than anything to be strong, self-respecting and independent and began to use her determination to work toward these positive goals, instead of hurting herself.

Kaitlyn’s first step was talking in family therapy about being secretly drawn to videos about suicide and self-harm on YouTube, especially when feeling sad or alone. She initially feared being judged and was scared that access to the videos would be taken away. However, as she trusted that it was safe to talk about these secrets without being judged and could make her own decision, Kaitlyn was able to evaluate what she wanted to do.

When taking a neutral step back to assess her thoughts and feelings, Kaitlyn recognized that exposing her mind to this content fed her fantasies, pulling her deeper into darkness, and created a cycle of regression which impeded independence and forward motion. Just as she could choose what food to put into her body based on its effect, she could decide whether she wanted to expose her mind to stories and images that made it harder to resist being self-destructive.

Trying Out New Behaviors

With encouragement, Kaitlyn became motivated to try out new ways to comfort herself. Learning better ways to regulate and take charge of her feelings gave Kaitlyn a jumpstart to taking healthy risks in the world.

Kaitlyn enrolled in a Saturday class in public speaking at a local college to develop her confidence. Having had a seizure at home after the first class, she missed the following class. She felt alienated and experienced a familiar sense of herself as defective, followed by the temptation to hide. In therapy she talked about the isolation and sadness she felt.

A week later, right after the next class, Kaitlyn burst with glee into the family therapy session, followed by her mom and dad. Grabbing the feelings list, she began the meeting as always — naming the feelings that fit her state at the moment: “Alive, amazed, confident, exuberant, happy, hopeful, proud,” she said. The excitement was contagious, but we glanced at each other curiously, waiting to find out what changed.

Kaitlyn went on to describe the class. The teacher asked for improvisational introductions by each student. Inspired by another student who made himself vulnerable, Kaitlyn bravely went up in front of the class and spontaneously spoke to her experience with epilepsy, telling her story in public for the first time. Looking around the classroom as she spoke authentically, Kaitlyn noticed people listening and completely engaged. Invigorated, she was fully present and one with herself. Everything felt natural. The class was mesmerized, responding with tears and applause.

Pride – the Antidote to Shame

Kaitlyn could barely contain the exhilaration brought on by this new feeling of pride (the antidote to shame) which emerged from a new experience of herself in relation to others. She took action that transformed her loneliness and alienation into a feeling of mastery and power. But the feeling of pride came not only from challenging herself with something meaningful to her and succeeding, but from something deeper.

Healthy Risk-Taking and Changing Behavior Patterns

Kaitlyn resisted the impulse to hide or pretend that typically escalated her feeling of being alone and ignited a self-destructive cycle. Instead, she took a healthy risk to let herself be seen, acting confidently from a position of strength and self-respect rather than a wish to be rescued.

Kaitlyn’s behavior created an opportunity for interpersonal feedback that challenged her sense of herself as defective and the belief that she could feel connected and affirmed only through pain. The key element here was that this challenge occurred experientially, not intellectually.

Healthy behaviors that foster connection and affirmation from a position of self-acceptance and self-respect offer the possibility of sustainable attachments. Here, Kaitlyn broke the cycle of feeling connected and affirmed only through darkness, potentially releasing herself from a treadmill of pain.

Choosing Happiness over Suffering: the Results

As she basked in the fact that people seemed to not only like her, but respect her and admire her courage, I said, “You see — you don’t have to hurt yourself to get people to see and care about you.” “ I like being happy!” Kaitlyn exclaimed, with a sense of wonder alongside awareness of the irony of this statement. She glance at her dad and they both smiled knowingly, “Who knew?!” her dad piped up in his good-humored way.

Disclaimer: The characters from these vignettes are fictitious. They were derived from a composite of people and events for the purpose of representing real-life situations and psychological dilemmas that occur in families.

If so, were you surprised because you hadn’t even noticed what you were feeling lately? Career, home, and other activities can get overwhelming. When it’s time to take something off your plate, how do you handle it?

• Recognize your body signals. The time comes when our stressed-out brain can’t take it anymore and our body begins to suffer the consequences. Our neck and back begin to ache. Our sleeping becomes disturbed and our appetite changes. We often get sick and begin to experience pains we didn’t know were possible.

  Are you able to recognize your body signals when your plate is getting stacked up too high?

• Notice your feelings. Are you irritable all the time? Sad, frustrated, angry, overly sensitive and lacking in confidence? Take a look at your feelings and notice if the “present” you is the “normal” you. If the answer is no, it’s time to make adjustments.
• What are your thoughts saying? Individuals with perfectionism tend to have overcrowded plates. Their thinking often includes a set of negative beliefs. These beliefs can distort the way they look at themselves and others. They may think, “If I don’t say yes, they’ll probably think I don’t care about them, or they’ll hate me.” This is an all-or-nothing type of thinking.

  Is your vocabulary full of should and ought-to statements? You may jump to conclusions when you think others are judging you because you are not doing enough or fulfilling others’ expectations.

  Have you noticed your thinking patterns? Before changing your negative thoughts, you need to become aware of them.

• Give something up. As difficult as this may be, at one time or another we may need to reconsider what we keep on our plate. I had an acquaintance who often would complain about her plate being too full. I asked her if there was something she could do without. She’d proceed to enumerate all that occupied her and say they were all important for one reason or another. She was not willing to take anything off, but was willing to be a victim of her own choosing. Sadly, she made those around her miserable because she didn’t want to make adjustments. The truth is, we have a choice!
• Worries. Once there was a psychologist who taught a valuable lesson regarding stress management to her audience. She raised a glass of water that was half full. Everyone expected to hear the lesson about the “half empty or half full” glass metaphor. To their surprise, the lesson had nothing to do with that. Her object lesson was about holding the glass up and its effect on the person’s arm. The longer it was held, the heavier it became.

  She then compared holding that glass with the stresses we endure. She reminded her audience that the longer they hold onto their worries the more burdensome they become. Holding them for a very long period of time can paralyze us.

• Say no. How did you respond the last time a friend asked you for a favor and you couldn’t say no? Were you concerned about your relationship? What if it’s your boss, professor, employee, or neighbor asking? Is the answer always yes?

  You really can choose what you take on. Sometimes individuals believe they can do it all if they’d just organize themselves better. I know some people who are great at keeping and completing their to-do list. They are efficient organizers, yet they exhaust themselves finishing that list. Unfortunately, their fear — offending someone — ends up happening because they overextend themselves.

  Assertiveness training may be in order if you have a difficult time saying no. Work on your need to please everyone. Remember it’s impossible to please everyone, and you end up losing when you try.

• Prioritize. Your values and standards come into play here. At the end of the day, what is it that you care about the most? There may be days when you are overscheduled. What will you choose? Someone once said, you are what you do the most. Decide what’s important, count your losses and move on.
• Find a balance. Nutritionists tell us we need certain amounts of protein, carbohydrates, fruits and vegetables each day. What are you putting on your life plate? Orison Swett Marden once said, “Work, love, and play are the great balance wheels of man’s being.” Are you including play and love activities?
• Love thyself. Before we can attend to others, we first need to strengthen ourselves and take care of our emotional, physical and mental well-being. Taking 30 to 60 minutes each day to keep ourselves spiritually, emotionally, and physically fit is not unreasonable. In the long run, taking care of ourselves will make us stronger so we can be there for our loved ones.
• Enjoy yourself. It’s time to make that stacked-up plate lighter and go play with your children, friends, and loved ones. When worrisome thoughts come in, put them on pause until later. Taking a break is healthy and in the long run will help you maintain the balance you need in life. You know yourself — so do what brings you true joy. Only keep on your plate what “really” needs to be there!

So many times we think we know where we’re headed; then we’re taking an unexpected turn.
~ Hopping Roller Coasters

Rachel Pappas’s memoir, Hopping Roller Coasters, details the unpredictable story of a mother and daughter who must cope with their mood disorders, until they can reach a place of mutual understanding that gives way to a stronger relationship with each other. Though I found the content to be emotionally painful at times, I think it’s an insightful read. Pappas provides us with an important takeaway message that revolves around genuine forgiveness and a path for healing.

Rachel’s story highlights her trials with bipolar disorder and how it affected her daughter, Marina. She transports the reader into their private moments, showcasing intimate arguments, where Rachel took out her frustrations on Marina in a raw and angry fashion. She didn’t mean the sentiments that came forth during the heat of an altercation, but biting words circulated between them. Rachel’s therapist ultimately put her on medication to regulate her mood swings.

We then read how Marina went through a period of hard knocks during early childhood and into adolescence; she had trouble focusing at school (she was diagnosed with auditory deficits), and she inherited her mother’s bipolar disorder as well. In desperate need of help, Marina endured a period of hospitalization and even moved away to live with her grandparents, hoping for a finer environment.

During Marina’s stay at her grandparents’, at 13 years old, she was hospitalized for getting hold of her grandfather’s painkillers. After a stretch of time, Rachel received a phone call from her mom, relaying the news that they couldn’t keep their granddaughter with them any longer. As difficult as it was to hear, she knew her daughter needed something more.

Marina also unfortunately struggled with cutting as a way to deal with her emotional turmoil. One of the more heartbreaking lines I read was when Marina explained why she did what she did. “It hurts on the inside, so I figured I might as well hurt on the outside,” she told her mother.

Fast forward a few years later: Marina was 16, and she and Rachel were at it again. Hurtful remarks and threats flooded their fights. “Where was my little girl? The one with the pixie cut who let me hold her hand crossing the street?” Rachel wrote. “My good-natured ‘pipster’ who accepted my excessive hugs and kisses into early puberty. I was losing her. No, I had lost her.”

What really struck a chord (even though I’m only in my 20s) was looking at this situation from the mother’s perspective. I could only imagine a parent’s sense of loss, among other things, when you’re watching your child transition away from childhood and into young adulthood. Now throw in that kind of strife, and it takes that particular awareness to a different level.

After another hospitalization at 18 years old, Marina went back on her medication and was finding her stride with a new job. She also began her first serious romantic relationship (which was definitely enjoyable to read about), and facets of her life were beginning to fall into place after a rocky decade.

In the final chapters, Rachel faced additional obstacles, but through it all, she found a new outlook regarding her relationship with Marina; she realized she didn’t want any friction in the connections that she valued.

By some twist of fate, Rachel’s personal challenges mended her history with her daughter and paved the road for forgiveness in both directions. They both knew that they unintentionally caused the other pain in the past, but they were able to move forward, become unstuck and salvage what really mattered. For that, I recommend this narrative.

Medication

With most psychiatric illnesses, medication is optional, and individuals can improve with other treatments, such as psychotherapy, said John Preston, Psy.D, a psychologist and co-author of Loving Someone with Bipolar Disorder and Taking Charge of Bipolar Disorder. However, “Bipolar disorder is probably the main psychiatric disorder where medication is absolutely essential. I’ve had people ask me if there’s any way to do this without medicine. [My answer is] absolutely not.”

Patients typically need to take multiple medications. “On average, people with bipolar disorder take three medicines at the same time,” Preston said. A large study by the National Institute of Mental Health found that 89 percent of people with bipolar disorder who were doing well were taking several medications.

“Don’t be discouraged if it takes a while [to find the right medicine]. Almost everyone who’s successful has to go through the same process.” That’s because in order to find the best treatment for each individual, doctors prescribe various medications and combinations. The goal is to find the right combination with the fewest side effects.

Unfortunately, troublesome side effects are the rule, not the exception, Preston said. In fact, around 50 to 60 percent of patients stop taking their medication or don’t take it as prescribed. This is why having regular and honest communication with your prescribing physician is critical.

But many people feel uncomfortable. They don’t want to “complain,” or assume their physician will be upset with them, Preston said. “I find that clients often don’t think they’re allowed to disagree with their doctors, and often end up going off their meds rather than having candid discussions with their doctors,” said Sheri Van Dijk, MSW, a psychotherapist and author of five books, including The Dialectical Behavior Therapy Skills Workbook for Bipolar Disorder.

Remember that you and your doctor are a team. “You have every right in the world to talk about every problem you run into,” Preston said.

The other reason people stop their medication is denial or wishful thinking, he said. It can take months after stopping medication for an episode to occur. This only validates the person’s belief that they don’t have the illness.

But while episodes may not be fast, they tend to be furious. Episodes typically get more and more severe, Preston said.

“Long-term studies that have followed people with bipolar disorder who have stopped taking their medication and have current episodes show progressive damage to parts of their brain.”

Lifestyle Management

According to both experts, cultivating healthy habits is paramount. Sleep deprivation and substance abuse exacerbate bipolar disorder and derail treatment, Preston said. Even patients who receive effective treatment don’t end up getting better if they’re abusing drugs and alcohol, he said.

If you’re struggling with substance abuse, seek professional help. Make sleep a priority. Try to get seven to eight hours of slumber per night, and wake up at the same time each morning. Consult your doctor if you’re traveling between time zones, which boosts the risk for manic episodes.

Social Support

“Often the success or failure of treatment has to do with how the family is involved,” Preston said. Family can either play a positive part in treatment or unintentionally undermine it. For instance, a family member who finds out their recently diagnosed loved one is taking medication might say, “You don’t need to take medication; you can handle this on your own,” Preston said. Again, not taking medication for bipolar disorder “can spell disaster.”

On the other hand, families can advocate for their loved ones. For instance, a parent might accompany their child to therapy when they’re in the throes of an episode and can’t articulate their concerns or symptoms.

Support groups, whether in person or online, also can be helpful, Van Dijk said. They remind individuals they’re not alone.

Psychotherapy

“The backbone of treatment is medication. But psychotherapy is enormously important,” Preston said. “While medications help to stabilize mood, they don’t change our thinking patterns, and the way we think affects the way we feel,” Van Dijk said. For instance, learning to change the negative stories swirling in your head may help prevent depressive episodes, she said.

Take the example of a client who was upset because her family pretended to forget her birthday, so they could give her a surprise party. “Instead of focusing on the surprise and the thought that her family had put into the surprise party, she was focused on how ‘cruel’ it was for them to pretend they had forgotten her birthday,” Van Dijk said. She helped this client “take a less negative and more neutral perspective on these kinds of situations.”

Van Dijk also teaches her clients mindfulness or “living in the present moment and practicing acceptance.” This helps clients not only accept their diagnosis but also become more self-aware. “We become more aware of our thoughts, our emotions, and our physical sensations because we’re in the present moment more often, and because we’re working on allowing ourselves to have these experiences, even if they’re painful.”

This self-awareness may prevent symptoms from escalating. By being more mindful, patients can spot an emotion and figure out what to do about it — “if anything” – before letting it careen into a full-blown episode.

According to Preston, “Numerous studies show that family-focused psychotherapy plus medication is really successful.” The goal of family-focused psychotherapy is to help the patient and family fully grasp the gravity of the illness and the importance of ongoing treatment, he said. It also teaches families how to provide support.

Interpersonal and social rhythm therapy also involves the family or significant other. The goal of this therapy, Preston said, is for “families and couples to learn to communicate more effectively and reduce really intense emotional experiences. It also incorporates strategies for lifestyle management.”

A big problem with psychotherapy is that clinicians who specialize in these treatments can be tough to find. Preston recommended checking out the Depression and Bipolar Disorder Support Alliance for facts on finding a professional along with other valuable information.

Accepting that you have bipolar disorder can be difficult. But not following your treatment will create a life filled with “one catastrophe after another,” Preston said. Instead, as both experts stressed, be honest with yourself. And make a strong commitment to taking your medication as prescribed and practicing healthy habits, without abusing drugs or alcohol.

Further Reading

Preston recommended these additional resources:

• The Bipolar Disorder Survival Guide
• Bipolar 101
• Bipolar Medications: A Concise Guide to Medication Treatments for Bipolar Disorders in Adults and Adolescents
• Consumer’s Guide to Psychiatric Drugs
• The website Bipolar Happens