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Different, Not Disordered: An Interview with Dr. Barbara Probst

By Rita Brhel, API’s publications coordinator, managing editor of Attached Family magazine and an API Leader (Hastings, Nebraska, USA). Originally published in the 2013 “Loving Uniquely” issue of Attached Family magazine (available free of charge to API members–and membership in API is free).

Headshot_(2)_copyWe often hear the importance of treating children fairly, but at Attachment Parenting International (API), we advocate rather to love each of our children uniquely. Because every child—just like every adult—is one of a kind, each individual parent-child relationship forms to the distinctive shape of each other’s differences in temperament, interests, opinions, aversions, conversions and other subtle nuances of what makes each person and their interactions unique.

API celebrates every person’s unique traits, but some children’s differences set them apart from societal expectations enough that daily interactions—whether at home, childcare or school—can be challenging. Rather than viewing our children through the lens of understanding, however, our society’s response is often to see these differences as “symptoms” of a disorder and to follow up with treatments that may not resolve the problem.

I am excited to share a discussion with Barbara Probst, PhD, LCSW, author of When the Labels Don’t Fit, on her approach to facilitate understanding among parents and teachers in order to discover a new relationship with sometimes-challenging children based on appreciation and respect instead of illness.

RITA: What inspired your alternative approach to “treating” children whose differences often lead them to being diagnosed with disorder?

DR. PROBST: I feel quite strongly about the way our culture seems to be viewing every difference, difficulty, struggle and quirk—every extreme or unusual behavior—as a disorder, especially when it comes to kids!

The idea for When the Labels Don’t Fit really grew out of my experience as a clinical social worker. So many parents were coming to me with kids who were intense, complex, confusing, rigid, provocative, volatile, inconsistent—challenging children who had either been given multiple diagnoses and treatments, none of which really helped, or whom no diagnosis seemed to fit.

These parents were understandably looking for some kind of explanation, some way to make sense of their child’s behavior. Yet the only thing they were offered was a negative framework, a way to categorize their child by what was supposedly wrong or missing.

There was no framework that also took into account a child’s strengths, talents, affinities, needs, style, temperament—the things a child loves and gravitates toward—as tools for understanding how that child responds to the world and who he or she really is. There seemed to be an assumption that “naming the disorder” was the key to assessing what was going on and making it better—as in the medical way, “fixing the problem” by diagnosis and cure—but it was obvious that this narrow approach wasn’t really helping anyone, neither kids nor their parents.

I got curious and started to investigate the whole “diagnosis explosion”—more and more kids receiving psychiatric labels, at younger and younger ages, for fewer and milder symptoms. The statistics are pretty staggering! For instance, one in every five American children meets current criteria for a psychological disorder, with three times as many kids now being diagnosed with emotional or behavioral disorders than were diagnosed 15 years ago. It makes you wonder if there’s really something wrong with 20% of our kids or something wrong with our definition of “normal.”

As a culture, we’ve pathologized a whole range of traits and ways of interacting with the world that used to be part of the variety of human experience. Some of the difficulties come from a poor fit with the environment, some from the struggles that are just part of living and growing up, and some are from unrealistic expectations and intolerance for kids who push the envelope or make us uncomfortable.

It’s not that a child’s struggles aren’t real or that some kids aren’t truly hard to raise. Certainly, there are kids who do things that seem odd or excessive at various points in their development, and of course it’s painful for parents when they can’t seem to reach or handle a child they love. And it’s not that “anything goes” or that kids don’t need to understand limits and develop empathy. But finding a disease-based category for the child’s problems isn’t the answer either! Just because a child has difficulty managing stimulation or frustration, hates change or needs to ground herself through touch, it doesn’t necessarily mean that those difficulties are indicators of an underlying pathology.

RITA: This is what many parents refer to as “spiritedness” or “high needs.”

DR. PROBST: I knew there had to be a better, more direct way to understand and help these challenging kids and their parents. I began focusing on the specific issue or trait, rather than the label that “explained” the trait as a symptom of one or another disease, zooming in to the feature, like perfectionism or impatience, that lay behind the problematic behavior. I wanted to understand who a child is, not what disorder he or she has—to be truly solution-focused and figure out why the roof was leaking instead of how to reward the child for mopping the wet floor.

RITA: That’s a great analogy. How did this approach work in the field?

DR. PROBST: I began to apply this new approach in my work, looking for a “difficult” child’s core features as the key to what made that child tick. Again and again, this new approach brought practical and positive results where nothing had helped before—in an amazingly short time!

I began to give presentations and workshops to parents, educators and mental health professionals, showing them how to use the temperamental map I’d developed to figure out how unusual or extreme traits interact with elements of the environment, and then how to target strategies—concretely and proactively—to a child’s specific features. It was so empowering! It gave parents real hope.

They began to see their challenging child as someone intriguing instead of someone to control or fear. What a great experience!

RITA: What temperamental differences do you find create the most friction? How would you define a “challenging child”?

DR. PROBST: Let me start by saying a word about temperament. Temperament is your essential nature, your innate way of being in the world. The early view of temperament, however, like the model Chess and Thomas developed in the mid-1970s, tended to present temperament as a series of good/bad polarities: attentive or distractible, adaptable or inflexible, and so on. I find that quite biased and value-laden, to be honest, like another set of pejorative labels.

It’s really about the fit between traits and context, not about some traits being intrinsically better than others. After all, a highly tenacious child who won’t cede her turn at the kindergarten easel until she’s satisfied with her painting is seen as resistant and antisocial, but she’s seen as admirably persistent in the science lab.

More broadly, if we lived in a culture that valued curiosity and responsiveness instead of order and self-restraint, we’d think that a child who could sit still for an hour, ignoring all the interesting people and impressions around him, as having “attention surplus disorder”!

So it varies, and traits that seem to be problematic in one situation or at one age can be an asset in another, the seeds of a child’s authenticity and fulfillment.

In addition, temperamental traits exist on a continuum, like a high need for stimulation or a low tolerance for change. Although traits in the middle may make you more mellow and adaptable to a wider range of contexts, no trait is inherently “better” or “worse” than another.

Think of it descriptively, rather than judgmentally: Some kids go off on tangents, some can’t bear to leave something unfinished, some find comfort in order and repetition or, on the contrary, always want change. Some like to plunge right in while others take time to warm up and then need to disengage slowly. Within each dimension, there’s a range, with a child tending toward the high or low end when he’s stressed.

Friction is more likely to arise, then, when a trait or its manifestation is at one of the extreme ends of the continuum, especially when the environment has a narrow zone of tolerance. A fixed time schedule—“It’s 10:00, put away your journals and get ready for recess”—can cause a shrieking tantrum in a child who has to “complete his mission” or needs to stop incrementally. A classroom full of stimulating choices can make a perfectionistic child, overwhelmed by all the roads not taken no matter what she chooses, highly anxious or irritable.

RITA: What about temperamental difference between a child and an adult?

DR. PROBST: By “environment,” I also mean the people in the child’s world. If you’re a parent who thinks spontaneity is fun, for example, and you have a child for whom that’s distressing and who really needs to know ahead of time exactly what to expect in order to feel safe, or vice versa, you’re more likely to encounter misunderstanding and conflict. For example, does your child prefer to know what she’s getting for her birthday, or does she want to be surprised?

So it’s often the mismatch, rather than the trait itself, especially when a child hasn’t matured enough to develop a repertoire of coping strategies or is blamed by adults who expect him to be the one to do all the adapting, rather than being curious and open to small changes in the environment that might create “wiggle room” or a “margin of tolerance.”

It’s also important to remember that different traits can lie behind the same challenging behavior, so you need to step back and figure out why your angry child won’t go to bed. Is it because of an irregular inner rhythm or pajamas that “don’t feel right”? Does he need to disengage a bit at a time because of high intensity and focus? Does she need to finish her game because she’s a perfectionist who can’t bear to leave something incomplete? Does he need a set of tactile markers to anchor the verbal instructions?

Threats, logic, cajoling, even offers of kindness and generosity—“how about an extra story?”—may have nothing to do with the reason your child refuses to go to bed. It’s like throwing solution darts at a situation in the hope that one will somehow stick! It’s not a matter of changing the exterior result—getting the child to “behave” and go to bed—but of understanding the interior cause and the child’s interaction with elements of the environment, including space, timing, tempo and sensory factors.

So a “challenging child” is one whose unusual, extreme or erratic traits have been misunderstood and mishandled, often due to a poor contextual fit. Your child’s need for movement or silence or control still must be met proactively, but a need that’s been respected and met, even partially, tends to lead to far less “challenging behavior” than a need that’s been ignored, denied or shamed.

RITA: What steps would you suggest for a parent seeking to learn a different way to look at and act toward their child?

DR. PROBST: One of the most powerful things parents can do is to change their language. Describe your child, to yourself and to her, as organized rather than obsessive, curious about life rather than distractible. Instead of calling her picky, tell her: “You sure do know what you like!” Instead of stubborn: “You’re not a quitter!” That helps her feel she’s not fundamentally defective and helps you feel more open and positive, which results in a less tense relationship that benefits everyone.

You can also use language to put borders around troublesome behavior. “You’re the kind of person who has a tough time with disappointment (or waiting, feeling rushed or feeling there are too many rules for how to do something).” That gives a precise, bounded and concrete place to begin, rather than making a child feel globally wrong or defective.

When a trait like low adaptability, for instance, is likely to pose a problem, talk about it in advance. Name it, predict and use respectful curiosity to help your child make a plan: “It really bothers you when kids change the rules for Capture the Flag. Variations aren’t fun to you; it just feels like they’re ruining the game. So what’s your plan if that happens today? Any ideas about what you can do?”

If your child has had a successful experience of managing a similar situation in the past, remind him of his past success and let him be the expert: “Remember how well you handled things that time the pizza place turned out to be closed? What was the secret of your success?”

If he’s not yet been able to handle it well, offer a suggestion in the spirit of experimentation. Collaborate with your child as detectives or scientists on a quest for data: “Well, I know something that tends to help people who like things to stay the same. Are you game to try and let me know if it helps?”

Tell your child: “I see that you really like to make your own decisions.” Include that feature in advance, rather than punishing your child afterward for asserting her desire to be in control. Give her a way to be involved in the decision about how to clean up, for example, before it’s time to clean up.

This kind of practical, respectful approach is so much more effective than trying to maintain complicated systems of points and penalties! Remember that your child is doing the best he can under the circumstances, given his limited resources. It’s not about reward and punishment, but about the power of self-knowledge. Your goal, in the end, is to help your child be happy and successful because of who he is.

RITA: Some parents still struggle to set limits with their children. It’s as if they and their child aren’t talking the same language.

DR. PROBST: A few core principles lie behind the more than 60 practical strategies in When the Labels Don’t Fit. One principle is to proactively and concretely match the strategy to the feature. For instance, a child who has difficulty feeling time needs a way to organize externally what she can’t organize internally. Tell her: “Two more times going down the slide,” (a unit of action), rather than, “Five more minutes till we have to leave the playground.”

A child who can’t bear disappointment needs a backup plan that’s already in place right from the beginning. For example: “My Plan B is chocolate chip cookie dough ice cream if they don’t have rocky road.” Your child can figure out his backup plan before getting in the car to go out for ice cream, then write it on an index card and put it in his pocket. Unexpected let-downs are harder, but the Plan B approach will be more likely to be accepted if your child has already practiced it in other situations.

A child with a ten-minute attention span needs a planned break after eight minutes.

A child who needs to control and becomes angry at not being in control needs a safe avenue to express power with temporal and spatial boundaries. What can she control? Can you give her a Magic Coin that she can “spend” each day on something where she can be the “boss”? That helps her learn to make and live with choices. Remember: If the only power you give a strong-willed child is the power to refuse, she will surely use it.

And so on. Once you get the idea that it all stems from “the kind of kid this is,” it becomes so much easier to be effective.

Another important principle is to show your child that you “get it.” Don’t try to make your child feel better by telling him that “it’s not a big deal”—to him it is—or that he doesn’t really feel what he feels. A child who’s hurt or angry at being rejected needs you to respect his reality and his temperament. If you deny or dismiss his experience, he’ll think you’re lying or don’t care or both. It’s better to say, “I get that it really hurts.”

Then think about his temperament. Is he the kind of person who feels better when he plunges into a new activity or when he has a quiet space to be alone? Does he tend to ruminate and thus need diversion to interrupt the cycle, or does he lock his feelings away and need help bringing them to the surface?

Too often, unfortunately, we end up rewarding a child for not being himself. A child who needs to touch or move, for instance, gets praised for not touching or not moving, rather than being given a safe way to meet his temperamental need for touch or movement. Then we’re surprised when that child becomes depressed or anxious or hostile.

Begin at the level where success is possible and build from there. Lowering the necessary dose gradually can be an empowering way to help a child manage her need for movement, praise, control and so on.

RITA: How do parents know when they may need more help, when a child should be evaluated for ADHD, bipolar disorder, obsessive-compulsive disorder, et cetera?

DR. PROBST: Certainly there are children whose difficulties go beyond an unusual temperament or poor temperament-environment fit. It would be just as wrong to dismiss a serious condition as it would be to over-diagnose a minor one. When we call every moody adolescent “bipolar” or every fidgety preschooler “ADHD,” we trivialize the very real suffering of those who truly do merit the label.

Deciding if a child may have an enduring problem beyond a quirky temperament is a complex process. It’s important to remember, however, that there’s no objective test for any of these diagnoses like there are for medical conditions like asthma or diabetes; the determination is always a subjective one. The criteria rely heavily on words like “frequently” and “often” and on checklists completed by adults rather than on a child’s self-report.

But if difficulties persist despite strategies to reduce stress and maximize adaptation, are present under a wide range of circumstances and cause significant impairment, then it may be wise to seek an outside evaluation.

It’s also important to remember that a child may still need help, even if she doesn’t necessarily meet the criteria for an official mental health diagnosis. The way our insurance reimbursement system is set up requires some diagnosis in order to justify the need for treatment under the principle of “medical necessity.” So the mental health clinician may select the label that seems the closest match, the least stigmatizing or the most likely to get the child the services he needs.

Yet in working with the child, what’s often more significant than the formal label are the specific impairing traits, which may or may not correspond to items on the official symptom list. For instance, “doesn’t feel time” and “is a perfectionist” aren’t on the list for any of the educational or mental health categories, even though they’re common problems.

RITA: Thank you so much, Dr. Probst, for your time and insights! Can you share any final thoughts on this topic?

DR. PROBST: It’s vitally important for us to keep questioning the idea that “difficult” or “different” means disordered! We need to reject the idea that every child who’s hard to handle or doesn’t fit in has a psychiatric disorder.

Many children go through tough times or seem extreme, eccentric, provocative or immature at various points in their development. But that doesn’t mean they have a disease that needs to be cured, medicated or taken as the most important aspect of who they are.

We need to ask the right questions. Instead of trying to figure out if a child has ADHD, Asperger syndrome or bipolar disorder, we need to take the labels apart, zoom in to understand each feature and find specific places where change is possible.

We need to identify the source of a problem—usually in unmet needs, discord and imbalance, not from something inherently wrong or missing in the child’s makeup—before trying to solve it by generic approaches. We need to tailor every strategy to fit a child’s specific traits and needs, and to take responsibility for how we, too, need to adapt. We can’t ask our kids to do all the work.

TAF2013lovinguniquelyYou can read more in the “Loving Uniquely” issue of Attached Family magazine, in which we delve into temperament and how it intersects with parenting and the development of attachment style, and we challenge the notion that every hard-to-handle child needs a diagnosis. The magazine is free to API members–and membership in API is free! Click the link above to access your free issue or join API.

The Danger of Pharmaceuticals

By Adrienne Carmack, MD

Danger of PharmaceuticalsIn April 2005, Rani Jamieson gave birth to a healthy baby boy, Tariq. She was given Tylenol #3, a medication containing acetaminophen and codeine, for postpartum pain. She took two pills twice a day, less than the prescribed amount, and cut this dose in half two days later after experiencing fatigue and constipation. She was told it was safe to take this medication while breastfeeding, and did so.

When he was seven days old, Tariq became excessively sleepy and had trouble breastfeeding. His mom began pumping and froze her extra breastmilk while continuing to nurse. She brought Tariq in to see his pediatrician when he was 11 days old for poor feeding; the pediatrician noted he had regained his birth weight and nothing further was done. On his 13th day of life, Tariq became unresponsive. When the ambulance crew arrived, he was already dead. Six months later, an autopsy showed a deadly overdose of the codeine his mother had been taking.

Codeine is generally regarded as a safe medication for use by breastfeeding moms immediately postpartum. In 2001, the American Academy of Pediatrics issued a report stating that codeine had not been reported as causing signs or symptoms of problems in breastfed infants and that it had no effect on lactation. It was included in a list of medications “usually compatible with breastfeeding.” Actually, several reports of apnea in infants whose mothers were taking codeine had been previously reported, in 1993 and 1984, according to a study published in the January 2007 issue of Canadian Family Physician.

Even today, the Academy of Breastfeeding Medicine, a breastfeeding advocacy organization, reports that codeine is generally a suitable choice for postpartum pain. In their report on pain control in breastfeeding mothers, they advise limiting doses of pain medications to the minimum amount necessary and suggest that nonpharmacologic means of pain control such as hypnotherapy may be better. However, they ultimately conclude that codeine is generally safe because it has been widely used by millions of women worldwide.

How can a medication that has been safely used in millions also be dangerous enough to kill a newborn baby, even when used at lower doses than the standards recommended? Scientists have recently begun studying the role of genetic variations in drug reactions. They have found that individuals with certain forms of genes are more likely to metabolize drugs in ways that lead to higher side effects. For example, the chemotherapy drug cisplatin causes hearing loss in some of the people who receive it, particularly children. However, until recently, no one knew why this was. It’s now been shown that certain forms of genes are responsible for this side effect, as published in the September 2007 issue of American Journal of Human Genetics.

For codeine, the answer lies in a gene called CYP2D6. Those with a certain form of this gene metabolize codeine very rapidly. Codeine works as a pain medication after it is metabolized to morphine, which then acts on pain receptors in the body. Those who metabolize codeine very rapidly end up with very high levels of morphine in their bodies very quickly. In the case of Tariq, his mother had symptoms early on, suggesting that she was a “fast-metabolizer” of codeine. Tariq was found to have morphine levels of 90 ng/mL, much higher than the level usually seen in infants receiving intravenous morphine, about 12 ng/mL. Rani’s frozen breastmilk contained 87 ng/mL of morphine.

Why, before codeine was deemed safe for the infants of nursing mothers, weren’t morphine levels in breastmilk studied? They were. A study published in The Journal of Human Lactation in 1993 measured the levels of morphine in the blood and milk of seven mothers taking codeine and in the blood of their infants. The levels of morphine in the infant’s blood never exceeded 2.2 ng/mL, which is generally considered a safe level, and is much lower than the levels found in Tariq’s blood.

Claims of medication safety are usually made after drugs have been tested in uniform populations at standard dosages, not in diverse populations that represent our society. In the case of CYP2D6 gene variations, the fast-metabolizer form occurs in up to 29 of every 100 people, depending on ethnicity, as published in the Canadian Family Physician study. It’s easy to see how measuring the levels of morphine in the milk of seven mothers of an ethnicity with a 1% rate of genes causing fast metabolism of morphine would be unlikely to include a mother with this variation. Had the study been done in mothers of Ethiopian descent, who have the highest chance of having this form of the gene, the researchers likely would have seen very high levels of morphine in the milk of at least one of the mothers.

Given these facts, it is likely that millions of infants worldwide go through their first days of life sedated and drowsy, while their mothers are reassured that the medication they are taking is harmless. Many new moms, unfamiliar with an infant’s behavior, may not recognize that their babies’ behavior is unusual. If they do worry and seek medical care, many doctors would fail to recognize the symptoms as a drug effect. One can only surmise the effects of this early drug exposure on brain development.

Genetic mutations such as this also account for other side effects of medications. For example, the CYP2D6 gene is also important in how the body handles another pain medication, tramadol. Those with the gene variation causing rapid metabolism are much more likely to experience nausea than those who do not. Half of rapid metabolizers develop nausea, compared to only 9% of those who are able to metabolize tramadol completely, according to a study published in the February 2008 issue of Journal of Clinical Psychopharmacology. Similarly, individuals with this form of the gene who take codeine have a 91% chance of becoming excessively sleepy with the medication, compared to 50% of those without it. Those who metabolize codeine very rapidly have 50% higher levels of morphine in their systems.

This new understanding of the role genes play in the way our bodies process drugs illustrates the reasons why pharmaceuticals that seem safe can still be very dangerous. Since this report was published, some strategies that have been recommended are using medications such as ibuprofen instead of codeine in breastfeeding mothers, using codeine for a shorter time after the baby is born, or even performing genetic studies in all mothers to determine if it is safe for them to use codeine while breastfeeding. These strategies are flawed. Simply reducing or changing the pain medication used is not likely to be effective in controlling a mother’s pain. Carrying out mass genetic screening would be extremely costly and time-consuming.

Not only are these strategies impractical, they fail to address the real issue. Pharmaceuticals are dangerous. Reports indicate that adverse drug events occur in 67 of every 1,000 hospitalized patients and are fatal in 3.2 of every 1,000 patients, according to a study published in the April 1998 issue of Journal of the American Medical Association. Worse, 95 of every 1,000 hospitalized children experiences an adverse drug event. Of every 1,000 children admitted to the hospital, 20.9 are admitted because of drug reactions. Almost half of these are life-threatening reactions. It’s estimated that 14.6 of every 1,000 children who are not hospitalized will experience an adverse drug reaction, as published in the July 2001 issue of British Journal of Clinical Pharmacology. According to the United States Food and Drug Administration, if these rates are accurate, adverse drug reactions are the fourth-leading cause of death in the United States. Even when drugs are thought to be safe for many years, using them can still have devastating consequences.

The best strategy, one that isn’t commonly proposed, is simply avoiding medications in the first place. Medications are widely overused. In the case of postpartum pain, choosing a natural childbirth, with alternate methods of pain control if needed, provides the safest environment for the baby. This option avoids the risks of codeine in particular and also lets women avoid all of the drug effects that are not yet understood and can’t be predicted. If a mother does feel that taking a medication is important for her health or that of her child, she should diligently watch for any side effects. Mothers are wise to listen to their bodies and to not hesitate to seek alternate treatments if concerning symptoms occur while taking a drug.

Some mothers who chose to avoid drugs while pregnant and breastfeeding do so because they are aware of studies showing the harms this can cause to their infants. Most, however, likely are led to this choice by their innate wisdom. The choice to have a natural childbirth is often criticized as unnecessary because of claims that drugs such as codeine are safe. The new understanding of genetic variations provides evidence that the instincts of mothers who choose to avoid these situations should be trusted.

Mothers who are in a situation where they are offered pharmaceutical treatments should carefully weigh the potential, unknown risks of taking these medications. Because the effects a drug will have on one individual cannot be predicted by what has happened in others, one cannot be too cautious in making this decision. As with many parenting decisions, the choice to use pharmaceuticals cannot be taken lightly. It is prudent for all individuals, but especially nursing mothers and growing children, to avoid these potentially toxic chemicals whenever possible.

Welcome to the Twilight Zone: A Boy Brought Back from Autism

By Avril Dannebaum, co-leader of API-NYC

Paint strokesMy son woke up that summer morning and came to me. His light blue-green eyes were clear, and he looked healthier than I had seen him in a long time. Something was different with my three-year old.

“I want to paint today.”

I paused in shock at his request. It was a bright morning, just one of many beautiful days we’d had that summer in 2000. But a feeling of unreality washed over me. With those simple words, I had entered the twilight zone.

For almost two years before that day, my son hadn’t spoken much at all, hadn’t searched out my eyes, hadn’t really done anything that a normally developing child would do. He had lived in a separate universe, a never-never land of lost boys and lost parental dreams. My little cabbage boy.

Suddenly, as spectacularly as my son had disappeared, he was back with me. I didn’t react. There were no big moments of hugging or kissing him. In general, he didn’t care for demonstrations of affection. So I didn’t fuss. Frankly, I didn’t quite believe what was happening. My husband was getting ready for work, and so I just went through the usual motions of making breakfast, while wondering if this would last. Wondering if I was dreaming.

I got out his paints and his easel. What had happened? What had brought my son home to me?

A Leap of Faith

The day before we had taken a train trip upstate to Brewster, New York to a DAN! (Defeat Autism Now!) protocol doctor  – the very same doctor who had been mentioned in Karyn Seroussi’s book, Unraveling the Mysteries of Autism and PDD.

About DAN!

Defeat Autism Now!™ (DAN!) is a project of the Autism Research Institute, a group of physicians, researchers, and scientists committed to finding effective treatments for autism. DAN! does not regard psychotropic drugs as the best or only means of treating autistic patients. More information can be found at www.autism.com/dan/index.htm.

My son had acted up on the train, screaming and yelling, hurling his body back against the stroller I’d confined him in. Being on the autistic spectrum this was standard operating procedure. I was glad that the train compartment was almost empty because it cut down on the amount of dirty looks I would receive for having a tantruming preschooler. Finally, after our taxi ride, he settled down in the doctor’s office while we waited. He had found a basket of fast food restaurant toys and he was content.

It never failed to amaze me that a child so nonresponsive to his mother and father, never hearing us and never searching us out, could spot a favorite toy from yards away and make a bee line to it. Yet I found that reassuring somehow – that even though he didn’t care for us, there was something in his universe that he loved: Blue from Blue’s Clues, Thomas the Tank Engine, Elmo and his other friends from Sesame Street. As long as he loved them, he wasn’t alone. They reached him where we could not.

The doctor recommended that we use twilight sleep so that my son wouldn’t struggle during the prolonged blood draw necessary for all the testing we needed to have done. And it would help because after taking the blood we’d be doing an IV push of Secretin and vitamins, which would also take more than a few minutes.

It took me and two nurses to hold down my son’s small yet very strong, three-year-old body. He screamed and struggled until the sedative took effect. It broke my heart, but I had had two years of getting used to being heart-broken. I was so used to it, and yet it still hurt.

My mother, 68 years of age, a vivacious woman who talked a lot but rarely gave any thought into what she was saying, lived only a few miles away and was there to pick up my very groggy son and me after the appointment. My son was very much under the effects of the drug we’d used to calm him and I had to be careful that he didn’t hurt himself as he flopped around. Thank goodness for my mother driving us back to the city because I’m not sure I would have been able to handle the train trip back. My boy went to sleep as soon as we got home.

And then it was the next day, and a child I hadn’t seen for two years was back with me. I didn’t think miracles happened just like that. Hadn’t the government and various studies debunked the use of Secretin? Maybe it had been the vitamins?

In the next few weeks, we spent all of our savings and maxed out our credit cards with this doctor, on the basis that the two years we had stuck with mainstream doctors and therapies had done little to nothing for our child. Time was passing. Our son’s childhood and potential were speeding by us.

Our leap of faith had paid off. Eye contact, and speech, but more – much more: someone was home again in there. Someone who knew us, knew that we loved him and cared for him.

The Food Connection

In Attachment Parenting (AP), very often a family will be confronted with a professional’s opinion that goes against what is in their hearts. Doctors will tell moms to quit breastfeeding and introduce solids. They will tell families not to share sleep, because it will permanently hurt the child. They are told to let their child cry-it-out.

Our doctors had ignored our son’s constipation and diarrhea for two years. Earlier that year his bowel movements had been so acidic that they had left welts on his upper thighs and testicles. We’d had to change him in the bath tub while he screamed in pain. And once, after having popcorn, our son’s constipation had reached the point where he couldn’t stand up straight or walk. It had taken two baby enemas to clean him out.

Our mainstream doctors hadn’t seen a connection between our son’s bowel problems and his Autistic Spectrum Disorder (ASD). Everything I had been told about it being solely genetic and irreversible, except through behavioral modification and heavy-duty drugs, was a lie. Here I had proof that ASD is reversible: Our boy was back, at least as long as he avoided gluten, casein, soy, and corn.

And so we took our first steps on a trip through a world where doctors, public health administrators, and even some politicians lie to protect themselves from the truth: Genetics is the gun, but environment is the trigger.

Our son’s dramatic response to Secretin had shown us that symptoms of autism are reversible. Eventually we found Secretin to have diminishing results, and it was his diet which kept him from drifting away from us.

The Vaccine Connection

Two years later, he had his first biopsy and colonoscopy and was found to have Lymphonodular Hyperplasia of the colon – a condition associated with chronic measles activity from the MMR vaccine.

Our Son Returned

This journey has been a long one, filled with twists and turns and even a few dead ends. I didn’t know, couldn’t know, if after losing two years of his development whether he would ever be fully normal. But he was talking, making eye contact and the stimming was gone, and that was good enough for my husband and me to see that our son was still there and had never been completely lost.

What is Stimming?

“Stimming” refers to repetitive, self-stimulating movement, such as through flapping, tapping, scratching, or rocking.

Where would we be now if we hadn’t listened to our hearts and tried alternate therapy for our son? I was grateful that I had a support community of parents who were of a like mind about AP. They stood by and encouraged me to believe that something more was going on with our son than genetics alone. They were there for me to help me parent my child gently even when he was screaming and tantruming every day. They helped me through the pain and anguish of my own son not knowing his mom anymore. Thank goodness for those parents who wouldn’t let me give up hope.

For More Information

Rescue Generation: http://www.generationrescue.org
Safe Minds: http://www.safeminds.org
NAA: http://www.nationalautismassociation.org
Autism Research Institute: http://www.autism.com
ANDI: http://www.autismndi.com
A-CHAMP: http://www.a-champ.org
Heavy metal toxicity: http://www.diagnose-me.com/cond/C15891.html

Changing the Course of Autism by Dr. Brian Jepson
Healing the New Childhood Epidemics: Autism, ADD, Asthma and Allergies by Dr. Kenneth Bock
Children with Starving Brains by Dr. Jaqueline Candless
Unraveling the Mysteries of Autism and Pervasive Developmental Disorder by Karyn Seroussi
Special Diets for Special Kids by Lisa Lewis
Evidence of Harm by David Kirby
The Child with Special Needs by Stanley Greenspan
Is This Your Child? by Dr. Doris Rapp

Another Look at Breastfeeding with HIV/AIDS: An Interview with Marian Tompson, co-founder of LLLI

By Rita Brhel, managing editor and attachment parenting resource leader (API)

Marian Tompson, founder of AnotherLook and co-founder of LLLI
Marian Tompson, founder of AnotherLook and co-founder of LLLI

When we think of the Attachment Parenting International Principle of Feeding with Love and Respect, what first pops into our minds is a woman enjoying a close breastfeeding or bottle-nursing relationship with her baby or perhaps a family sitting around the dinner table engaged in a lively conversation about the day’s happenings. What many of us don’t picture are the myriad challenges many parents must encounter in order to do what seems to be such a basic part of child-rearing: feed their child.

Unless we’re experiencing a challenge at the time, we don’t think of the working mother pumping her breast milk, the parents feeding breakfast to their son via a stomach tube, or even the parents struggling with emotions toward their picky preschooler. And we certainly don’t think what it must be like for the HIV-positive mother who wants to breastfeed but is opposed by the medical community. But there remains debate about breastfeeding by HIV-positive mothers and whether the mother, particularly in developing countries where there are additional serious risks to not breastfeeding, should breastfeed or formula-feed her newborn.

Even for breastfeeding advocates, breastfeeding by HIV-positive mothers is a gray area. We want all mothers to feel welcomed to nurse their babies, but no one wants to pass HIV to their child through this naturally loving act. When going against what seems natural to us, we have to look at the research — and many of us probably do not fully understand what the studies have found.

It is because of this gap in knowledge and application of that knowledge that Marian Tompson founded AnotherLook as a 501(c)3 nonprofit organization in 2001, separate and unaffiliated with the La Leche League (LLL) International she co-founded more than 50 years ago. The opening statement on the homepage of AnotherLook’s website, AnotherLook.org, says it all: “The issue of HIV and human milk has been clouded by possibly questionable science, lack of precision concerning the definition of breastfeeding, and premature public policy statements.”

Editor’s Note: Attachment Parenting International finds the mission of AnotherLook to be incredibly important to the HIV-positive community. However, API wants to make it clear that this contents of this article do not constitute medical advice and that all HIV-positive women should consult their health practitioners regarding breastfeeding and their child’s risk of transmission. API cannot be held liable for any personal decisions made by readers based on the contents of this article.

I first heard about the monumental hurdles HIV-positive women face in breastfeeding while attending a LLL conference in Nebraska last summer. The speaker was Tompson, and her topic that morning was the nonprofit organization called AnotherLook (at Breastfeeding and HIV/AIDS), which helps to educate both parents and professionals as to the issue of breastfeeding by HIV-positive mothers.

About AnotherLook
AnotherLookBased in Evanston, Illinois, AnotherLook is dedicated to further its mission to gather information, raise critical questions, and stimulate needed research about breastfeeding in the context of HIV/AIDS. AnotherLook questions feeding strategies based solely on the possibility of virus transmission instead of on maximizing the probabilities for good mother-infant health. The organization calls for clear, published scientific evidence as to the type and manner of feeding that will minimize infant morbidity and mortality and seeks out scientific proof that infectious HIV virus is present in breast milk and is transmitted from mother to baby through breastfeeding.

AnotherLook provides presentations, position papers, and recommendations, which can be found at its website.

Tompson spoke about the variety of information related to HIV/AIDS and breastfeeding, such as that the medical community in industrialized countries like the United States advises HIV-positive women not to breastfeed their babies. The guidance is out of fear of transmitting the virus to their child. One story told was of a woman in only the last couple years whose baby was removed from her care until she promised not to breastfeed, because the authorities called the choice to breastfeed over using formula as dangerous mothering.

It is for this reason that AnotherLook exists — to give HIV-positive mothers and health professionals factual information on what we know and don’t know about breastfeeding when a mother is HIV positive, to ask critical questions, and to stimulate needed research. Knowing the importance breastfeeding has in establishing a strong mother-child attachment relationship, you can understand what this organization means to those women with HIV/AIDS for whom AnotherLook provides a voice in exclusively breastfeeding concerns.

A Call to Action
AnotherLook has issued a Call to Action to assure the best maternal-infant health outcomes in relation to infant feeding in the context of HIV/AIDS. This call is needed because current research, policy, and practice, often based on fear, are focused on the reduction of transmission while neglecting the impact on morbidity and mortality. This not only may be misleading but may inadvertently set back critical gains already achieved in public health as a result of the protection and promotion of breastfeeding.

AnotherLook acknowledges the possibility that HIV may be transmitted through breastfeeding and that there is an urgent need for feeding guidelines.

In light of the above, AnotherLook calls for immediate action to provide:

  • Clear, peer reviewed research, with careful ongoing follow-up, which will provide sound scientific evidence of optimal infant feeding practices that lead to the lowest morbidity and mortality.
  • Concise, consistent definitions of feeding methods, testing methods, HIV infection and AIDS.
  • Development of research based infant feeding policies which are feasible to implement in light of prevailing social, cultural and economic environments; which address breastfeeding (particularly exclusive breastfeeding) as a critical component of optimal infant health; and which fully consider the impact of spillover mortality/morbidity associated with infant formulas.
  • Epidemic management from a public health perspective, with the focus on primary prevention, careful, unbiased surveillance, and the achievement of overall population health with the lowest rates of morbidity and mortality.
  • Evidence-based practices which protect the rights of both mothers and infants including education, true informed consent, support of a mother’s choice, and avoidance of coercion.
  • Funding to support the above actions and those programs which improve maternal/child health in general such as prenatal and postnatal care, nutrition, basic sanitation, clean water, and education, as well as exclusive breastfeeding until clear scientific evidence supporting the abandonment of breastfeeding is available.
  • Continued commitment by local and global researchers, policy makers, health workers, and funding bodies to basic scientific, medical, public health, and fiduciary principles in responding to this critical issue.

In summary, AnotherLook calls for answers to critical questions not currently being addressed that will foster the development of policies and practices leading to the best possible outcomes for mothers and babies in relation to breastfeeding and HIV/AIDS.

With the background laid out, let’s turn to Tompson for more information on the past, present, and future of AnotherLook.

RITA: Hi Marian. I recall hearing you say at the LLL conference that, knowing the time and energy and sheer work that goes into building up a successful nonprofit organization as LLL International is, founding another organization was a task that you never thought you would do. What made you decide to pursue the organization of AnotherLook?

MARIAN: It has always been important to me (and La Leche League) that mothers get correct information.  In 1997, when WHO [World Health Organization] changed its infant feeding recommendations when a mother was HIV-positive from one where the decision would be made on a case-by-case basis as to whether or not she should breastfeed to one where all HIV-positive women were encouraged to formula-feed if at all possible, I set out to find the studies that backed up this change.

I was looking for the evidence proving that babies who are breastfed by HIV-positive mothers are more likely or less likely to get sick and die than those fed formula mixed with possibly contaminated water, which is common in developing nations with HIV/AIDS epidemics such as parts of Africa.

RITA: What did you find?

MARIAN: We question infant feeding strategies based solely on the possibility of virus transmission instead of on maximizing the probabilities for good mother-infant health. We still don’t know if HIV virus in breastmilk is actually live (infectious), and if it is infectious, if there is enough to infect the baby. We have a team ready to research this and have been looking for a grant to cover the cost.

The challenge is that most people in this field think we already have the answers to these questions.

RITA: How has AnotherLook reached out to professionals and the HIV-positive community?

MARIAN: We have had an international focus since the beginning, calling attention to the difference in recommendations depending on where the HIV-positive mother resides.

We have a private chat list that includes researchers, health professionals, speakers on this topic, health workers working with mothers in Africa, and LLL leaders and others interested in this issue.

We were invited to do roundtable sessions at an American Public Health Association annual meeting, did a poster session at the International AIDS Conference in Toronto [Canada], and our abstract was included in the syllabus of last year’s International AIDS Conference in Mexico City [Mexico]. We have given presentations at LLL conferences, both in the United States and abroad.

We’ve had letters printed in major medical journals criticizing published research.

RITA: Do you have any success stories that stand out of how AnotherLook is able to educate mothers or professionals in a way that changed the course of establishing a breastfeeding relationship when HIV/AIDS is a factor?

MARIAN: We have helped to change recommendations on infant feeding in developing countries from one in which mothers were told to formula-feed if at all possible to one where now all mothers are encouraged to breastfeed exclusively for six months.

About these Recommendations

http://www.who.int/hiv/mediacentre/Infantfeedingbriefingnote.pdf

http://whqlibdoc.who.int/publications/2007/9789241595964_eng.pdf

Our poster sessions have pointed out the lack of evidence in the citations used to back feeding recommendations. The research hasn’t been done that would give us the answers needed about breastfeeding when a mother is HIV-positive.

We have become a resource for women in the United States who have no support group, like drug users and gay people have if they are diagnosed with HIV virus.

We also educate professionals about the assumptions that have long been accepted as facts.

RITA: Where do you see AnotherLook heading in the future?

MARIAN: Continuing to provide information through presentations and our website, while responding to inquiries. Even school children have contacted us. Working to get the research still needing to be done accomplished. Raising funds to enable us to participate in discussions of this issue.

When a director from UNICEF, who initially questioned the need for AnotherLook, attended one of our presentations at an LLL International Conference, she said that AnotherLook should participate in all international discussions because we were including elements that others had overlooked.

RITA: Thank you for your time, Marian. Do you have any closing thoughts?

MARIAN: New online at www.anotherlook.org/updates is Rodney Richard’s letter questioning the wisdom of mandatory testing of newborns for HIV. Richards is a bio/organic chemist who worked many years for Amgen, the world’s largest biotechnology company, specifically in the area of HIV test development.

His letter is in light of legislation passed in Connecticut, Illinois, and New York that require mandatory testing for HIV in newborns. Many states, such as Arkansas, Michigan, New Jersey, Tennessee, and Texas, have laws requiring HIV testing of pregnant women as part of routine prenatal care and then testing of newborns if the HIV status of the mother is unknown. We will probably see this legislation being considered in other states.

Also in the works are:

  • A detailed paper on WHO’s changing recommendations on infant feeding when a mother is HIV-positive
  • A report from the session we put on at the LLL International 50th Anniversary Conference, “Breastfeeding and HIV: What Works, What Doesn’t, What Has to be Changed,” with Cathy Liles, BBA, CPA, MPH, IBCLC, a member of the LLL International Board of Directors, and Ted Greiner, PhD, coordinator for the World Alliance for Breastfeeding Action Research Task Force.

About Marian Tompson
Marian was one of seven women who co-founded La Leche League as a way for women to seek out support and education in breastfeeding as the best way to feed infants. LLL’s beginnings came at a time in history, 1956, when women were advised to forgo breastfeeding as an infant-feeding option. At this time, the U.S. breastfeeding rates dropped to only 20%.

Marian had an instrumental role in the nonprofit organization of LLL, serving as president for 25 years. In 1958, she started the newsletter that eventually became the magazine we know today, New Beginnings, and in 1973, she began the annually held Breastfeeding Seminar for Physicians.

Today, besides her work with AnotherLook, Marian is involved in the LLL Founders’ Advisory Council and the International Advisory Council for the World Alliance for Breastfeeding Action, and is vice chair of the United States Breastfeeding Committee. She and her late husband Tom raised seven children. Marian also has 16 grandchildren and five great-grandchildren.

API’s Connection >> Reedy Hickey, IBCLC
Reedy HickeyAnotherLook and API share a member of their respective Boards of Directors. Hickey not only provides leadership to both organizations but also advocates breastfeeding as a local La Leche League leader and Georgia’s LLL professional liaison. She is the mother of two grown children and 32 foster babies, and practiced AP with each.

What to Do When a Cesarean Becomes Necessary

By Michelle Smilowitz, CD-DONA, reprinted with permission from International Cesarean Awareness Network, © ICAN-online.org

Baby born by CesareanThe birth of a child is one of the most significant events in the lives of families. It is considered a rite of passage by many women and involves the first interaction between parents and their baby. There is much buzz today about the necessity of making birth a “family-centered” experience, where the focus is often on creating a special environment for bonding between parents and child in the first moments and days of life. But what if you are one of the  women who experiences your baby’s birth as a Cesarean section? Is it possible to make your surgical experience into a family-centered birth?

The answer is a resounding yes. While planning a family-centered Cesarean is easiest for the woman who must, for whatever reason, schedule her baby’s birth, there are a number of ways that a woman who encounters an unplanned or even emergent Cesarean surgery can make her experience into a celebration of her baby’s birth.

Become Familiar with the Procedure

It is first important that every pregnant woman and her partner become aware of the procedures that surround a Cesarean surgery. Many women who experience unplanned Cesarean deliveries lament that, “I skipped the section of the book on Cesareans; I assumed it couldn’t happen to me!” Having some familiarity with the procedure and all that it involves can help reduce much of the surprise and fear that can surround the unknown.

For More Information on Cesarean as a Procedure

If your Cesarean is planned, it is important that you have the opportunity to fully discuss with your care provider the reasons for your surgery. Knowing that this surgery is the best choice for your or your baby can create a less tense environment for the delivery. If you desire a vaginal birth and feel that a Cesarean surgery may be unwarranted for you, consider getting a second medical opinion that all medical consumers are entitled to.

Write a Birth Plan

Next, plan this birth just as you would a vaginal birth. Write up a birth plan including your preferences for the surgery as well as for yours and the baby’s postpartum care. In the case of a pre-planned Cesarean, it is usually possible to schedule an appointment ahead of time with your anesthesiologist. He is the person who actually controls the environment of the operating room. For example, generally, women’s arms are strapped down for their surgeries, so that they do not dislodge IV wires or sully the sterile surgical field. Ask if you can have at least one of your arms free or have your support people hold your arms in place.

Discuss the pros and cons of both epidural and spinal anesthesia as well as the effects of various other medications you may receive both during and after the surgery. Some of the medications that treat specific symptoms such as trembling and nausea may cause extreme drowsiness or amnesia. You may decide that you would rather tolerate these symptoms than be asleep for the first few hours of your baby’s life.

When you write your birth plan and discuss it with your care providers, there are a number of things you may want to consider. Many women negotiate to have two support people with them in the operating room, generally their partner and a doula or friend and family member. Doulas are a great addition to a Cesarean birth team. They are familiar with the process and can reassure you and your partner. Additionally, if you and your baby need to be separated at any point, your partner can accompany the baby while your doula stays with you. Doulas also often have some expertise in post-Cesarean breastfeeding and can help with this.

Many women ask for and are given the right to play music of their choosing for the birth – this can soothe you and serve as a pleasant way to welcome your baby into the world. Feel free to ask those at your birth to refrain from extraneous conversation, and request that if possible someone (generally a member of the medical team) narrate for you exactly what is going on throughout the birth. Ask if you can take photographs or videotape the birth – many women enjoy the opportunity to “see” the birth later on. Sometimes, black-and-white pictures are preferable for this – they preserve the drama of the birth while eliminating a direct view of blood, troublesome to some.

Many women feel a disconnection from their Cesarean baby because they did not actually see or feel the baby born. If you are interested in actually seeing your baby as he emerges from your body, you can ask to view this by having the drape across your abdomen that blocks your view lifted for the actual delivery or by using a mirror.

Before the Cesarean, ask that the medical personnel not announce the sex of your baby — instead allowing you or your partner to discover this. Request that all necessary newborn exams be done in your line of vision or even on your chest, and to make physical or verbal contact with your baby as soon as possible. Your baby has been accustomed to hearing yours and your partner’s voice for the past nine months – even if you cannot touch your baby, you or your partner can soothe your baby with your voice. With the help of an excellent nurse or doula, some women are able to nurse on the operating table, while others wait until the recovery room. Regardless, ask to touch your baby as soon as possible, and to keep the baby with you in recovery if all is well.

Get Help After the Cesarean

During the immediate postpartum period, you are going to need a lot of help! After a Cesarean surgery, women are often confined to bed for as much as a day or two. Once you have been given permission to get up, even such simple movements as rolling over in bed can be quite painful. Clearly, trying to take care of yourself as well as a new baby is generally too much. Having a partner, friend, or relative stay with you in the hospital can help ensure that your baby will room in with you. This person can help with changing diapers, bringing the baby to you to nurse and positioning the baby at the breast, as well as assisting you with your needs.

Once you are home, extra help will enable you to have a more rapid recovery, as well as give you the opportunity to nurture yourself and bond with your new baby. Many women find that they need extra help with breastfeeding after a Cesarean, and there are a number of resources for this.

Not all of these suggestions will work for every situation, and of course, in the case of the emergencies that can occur during surgery, plans may need to be changed or abandoned. Nonetheless, using some or all of these suggestions can help your surgery feel more like your baby’s birth!

Originally published in the Birth Journeys newsletter of ICAN of Seattle, Summer 2004.

Discuss this topic with other API members and parents. Get advice for your parenting challenges, and share your tips with others on the API Forum.

America’s Family Crisis: Parental Depression Putting 15 Million U.S. Children at Risk

By Rita Brhel, managing editor and attachment parenting resource leader (API)

America's Family CrisisDepression is beyond epidemic proportions, not only in the United States but in many societies around the world. People like to blame more recent economic downturns, but these high rates of depression have been an ongoing concern for many years from before the stock markets took a dive.

If depression was the H1N1 Influenza virus (a.k.a. swine flu), no one would venture to the streets or grocery store without a face mask for fear of transmission, schools and businesses would be closed indefinitely, and medical clinics and hospital emergency rooms would be packed with people clamoring for screening and treatment.

But depression isn’t contagious like the flu – although it certainly is more debilitating and has just as much potential to kill. It doesn’t spread by sneezing and coughing, but it is still “contagious” in that people living with a depressed significant attachment figure, whether adult-adult or parent-child, are more likely to develop depression themselves and all that comes with this illness – the hopelessness, the sorrow or anger depending on the person’s response, the suicidal thoughts and possible attempts.

Depression is pervasive in the United States, and it is devastating to families – to marital relationships and to children’s development. We know through attachment research and neuroscience that the way we are parented not only affects the behavior we use in reaction to stressful events but also changes the way our brains work and our genes express brain chemistry reactions to stress. This means that if we are parented in such a way that consistently teaches us to react poorly to stress and conditions our brain to release stress chemicals at high rates, we are literally creating a child who will grow up into an adult who is prone to depression and all that comes with it.

Our families are in crisis.

New Report Brings to Light the Impact of Parental Depression

A new report, Depression in Parents, Parenting, and Children: Opportunities to Improve Identification, Treatment, and Prevention, was released by the National Research Council and Institute of Medicine of the National Academies last week at a public briefing in Washington, D.C. Attachment Parenting International attended via webcast.

The National Academies consist of the National Academy of Sciences, the National Academy of Engineering, the Institute of Medicine, and the National Research Council. They are private, nonprofit institutes that provide science, technology, and health policy advice to the United States under a congressional charter.

Depression in Parents, Parenting, and Children explores the interaction of depressed parents and their parenting practices, and the impact on children. It also proposes strategies to promote more effective interventions, as well as recommendations for improving the quality of care for depressed parents and their children. The study was funded by the Annie E. Casey Foundation, The California Endowment, the Robert Wood Johnson Foundation, the U.S. Health Resources and Services Administration, and the U.S. Substance Abuse and Mental Health Services Administration.

Report committee members who attended the briefing included: Chair Mary Jane England, MD, president of Regis College in Weston, Massachusetts; William Beardslee, MD, professor of child psychiatry at Children’s Hospital in Boston, Massachusetts; Mareasa Isaacs, PhD, executive director of the National Alliance of Multi-Ethnic Behavioral Health Associations in Bethesda, Maryland; and Frank Putnam, MD, professor of pediatrics and psychiatry at the Cincinnati Children’s Hospital Medical Center in Cincinnati, Ohio.

The Prevalence of Depression

The briefing opened with an overview of depression in the United States, presented by Isaacs. The exact number of people affected with depression is difficult to pinpoint, but it’s estimated that only one-third of adults with the illness actually receive treatment. In some sample communities, as many as 70% of people with depression go without treatment. Although depression treatment is very effective, there are a number of factors preventing people from seeking help: the stigma of mental illness, lack of transportation, inability to afford services and medication, language and cultural barriers, and lack of providers or at least those with training in identifying and treating depression.

Despite not knowing the full extent of depression, there are several tendencies that Isaacs pointed out:

  • Women have double the rate of depression as men.
  • Caregivers are more likely to have depression.
  • Depression typically first shows in adolescence or young adulthood.
  • Those living in poverty are more likely to have depression.
  • Depression is more common among adults who are separated or divorced than those who are married.
  • Depression rarely appears alone – 75% of people who suffer from depression also suffer from traumatic histories such as sexual abuse or exposure to early childhood violence, substance abuse, a medical condition, or another mental health disorder especially anxiety or post-traumatic stress disorder.
  • The development of depression rests in a combination of genetic susceptibility, environmental factors, and individual vulnerability. Depression is as much the result of other issues in a person’s life, as it is the indicator that there are additional problems.
  • The majority of adults suffering from depression are parents.

The Impact of Parental Depression

It is this last point – that the majority of adults suffering from depression are parents – that is the take-home message. It is estimated that in the United States alone, one in five parents are affected by depression each year, or approximately 7.5 million. Here’s the kicker: 15.6 million children under age 18 live in these households where at least one parent is depressed, Isaacs said. Depending on the age of the child, they can be as much as 40% more likely to develop depression themselves with just one depressed parent in the home, said Putnam said – let alone both parents. “Mothers and fathers are often depressed together,” Beardslee added.

Remember what we know about attachment and how this affects the development of our children. For more than 15 million children in the United States, either their primary attachment figure or a strong secondary attachment figure is depressed and modeling all that comes with it.

“Depression is primarily a family issue,” Isaacs said. “It affects not only the individual but also children and other members of the family. It affects parenting.”

While the majority of research in parental depression has included mothers only, the few studies that have been conducted on fathers shows that the impact of children living with a depressed secondary attachment figure is just as devastating as living in a home with only the primary attachment figure suffering from depression, she said.

“Many people don’t get treatment, and those who do, don’t for years,” said Beardslee. “This makes a great impact on the family.”

Depressed parents tend to raise their children in an emotionally detached, withdrawn parenting style that affects the development of attachment, Putnam said. People with depression use fewer positive parenting approaches and more intrusive handling of children, and the end result is a child who is himself withdrawn.

“Depression causes terrible suffering,” in both parents and children, Beardslee said. Depression effectively destroys the attachment between a parent and child. The inconsistencies in parenting by depressed parents leads to a break in trust between the child and his parent. Long-standing depression causes neglect and often abuse. While depression symptoms manifest themselves differently in each person, women tend to be sad and withdrawn while men tend to be irritable and acting out.

Beardslee told of one mother who described what depression does to her parenting: When she isn’t depressed, she has very positive, emotionally close, and healthy interactions with her 12-year-old son, and when he comes home from school, they go through a routine of talking with, playing, and otherwise spending time with one another. But, when she is depressed, all that positive parenting disappears – she puts her son in front of the television and ignores the routine and his emotional and physical needs.

This break in routine, which is so important especially for older children, greatly affects the mental health of the child, Beardslee said. He feels inadequate, as though he is to be blamed for his mother’s withdrawal. Her depression affects his self esteem and models her poor responses to stress – significantly increasing the risk that he will eventually develop depression himself and unhealthy coping mechanisms expressed through social, behavioral, and other mental problems. He will feel the effects of chronic parental depression long after his mother’s depression is treated.

Not every parent with depression will inadvertently or deliberately cause harm to their children, but parental depression increases the risks for spillover consequences during critical periods of child and adolescent development.

“We’re very concerned about the impact on children,” Putnam said. While there is only a 2-4% risk of a small child developing depression when there is a depressed parent in the home, this risk jumps up to 20-40% in adolescents. “What also comes with this is the risk of substance abuse,” which is predominant among depressed individuals, Putnam added.

“To break the vicious circle of depression, we need to refocus our view of this illness through a broader lens that sees the whole family, not just the individual with depression,” England said. Beardslee added: “We need to think about people who are depressed as parents first, and individuals with depression second.”

This goes beyond postpartum maternal and infant depression – the screening and treatment of which is becoming increasingly more commonplace in the medical care community: “The first few years of life are crucial, but we need to look more into the long term,” Beardslee said.

The Report Committee’s Recommended Solution

Currently, most screening and treatment of depression happens in primary medical care settings, Beardslee said. However, because depression is more typical in families living in poverty and perhaps without the means to see a doctor, there must be more avenues for depressed parents to find help. Because depressed parents are often withdrawn and difficult to engage, more types of service providers outside the mental health system need to be trained to spot the symptoms of depression and to direct those who need help to accessible entries into the health care system.

Once parents seek treatment, the mental health care system must change the way it treats this illness. Because of the impact on children, interventions should adopt a two-generational approach – parent and child – to effectively treat depression in families, Beardslee said.

Putnam listed these critical components to an effective model of family-centered treatment for depression:

  • Integrative – meaning that all factors contributing toward the depression must be identified, whether this includes poverty, marital issues, health problems, etc.
  • Comprehensive – meaning that all co-occurring conditions must be identified and addressed, such as substance abuse and anxiety disorders.
  • Multi-generational – which encompasses screening and treatment for both parents and children by one mental health care provider rather than by separate providers who often don’t know the full extent of depression on the family members.
  • Preventive – which includes teaching parents positive parenting skills and skills to cope better with stress.
  • Developmentally appropriate – any treatment should appropriate to the particular age group of the children involved.
  • Accessible – screening should be available through programs frequently used by at-risk families such as home visitation, Headstart and other school-based programs, federal nutrition programs, etc., and those parents who are identified as depressed should then be assisted in navigating the mental health system to receive treatment. In addition, the financial barriers of at-risk families must be addressed – many may not have insurance or income, and those who are able to afford services may have difficulty paying for services for more than one person in the family. Also, the mental health system must look into ways of delivering services in nontraditional settings to be able to reach at-risk families, including schools, prisons, community programs, and even homes.
  • Culturally sensitive – which includes techniques to overcome language barriers, stigmas, etc.

“There are a number of exciting initiatives with parts of these features, but no program yet has all of these features,” Putnam said. As it is now, “parents with depression are like orphans” in the mental health system, he added.

To jump-start this model, Putnam suggested the mental health system focus first on implementing a two-generational, more comprehensive focus. More health care providers need to receive training specifically in multi-generational depression. Practices should look into ways that would reduce the financial impact on at-risk families such as charging on a sliding scale, combining children and parent charges into one office visit instead of two, and negotiating with insurance companies to provide same-day reimbursements on medical care services. Once programs are in place that effectively treat family depression, they should be included in training models for other providers.

In addition, more research dollars need to be allocated toward studies that look at the impact of parental depression on children as well as the differences between the impact of depression in fathers and mothers, Putnam said.

The report committee said this report represents a call for urgency from the U.S. Surgeon General and the various mental health organizations and agencies – a major mental health concern that needs to have a working plan in place in the next six to eight months.

What is API Doing?

API actively helps parents who are prone to depression or are depressed by teaching parenting skills and providing resources to help parents develop better ways of coping with stress and strong emotions. According to researchers at the University of Michigan, who reviewed the numerous studies on the subject, there is a link between social support and wellness. Support networks are vital not only in preventing depression but also in its treatment. Local API Support Groups provide parents with a way to develop a solid support system that can follow them through their child’s many developmental stages and the challenges that come with them.

And if parents do fall into depression, API Leaders can help direct parents to the treatment they need as well as continue providing support through the local group or personal consultations, free of charge.

Discuss this topic with other API members and parents. Get advice for your parenting challenges, and share your tips with others on the API Forum.

Speaking Out About Postpartum Depression

By Rita Brhel, managing editor and attachment parenting resource leader (API)

**Originally published in the Spring 2008 New Baby issue of The Journal of API

Postpartum DepressionSo many first-time moms are caught off-guard by their emotions after giving birth to the baby they’ve been waiting for months, even years, to join their family. It’s completely normal to feel a letdown after the big day. After all, childbirth is a life-changing experience in every way. What new moms and their partners need to do is understand how to recognize the “baby blues” and what can help until they go away…usually in a couple weeks.

If not – if the symptoms are lasting much longer, are just plain overwhelming, or are accompanied by feelings of hurting the baby or yourself – see your doctor immediately. Mothers with intensely sad or angry feelings could have postpartum depression, or the more serious postpartum psychosis. These symptoms are very serious and can even be classified as medical emergencies. But they are very treatable; it doesn’t take long until you’re feeling back to yourself again and are able to enjoy the bonding time with your new baby that both of you deserve.

I know this firsthand. Continue reading Speaking Out About Postpartum Depression

Hannah’s Story: Infant Reflux

By Stephanie Petters, leader of API of North Fulton, Georgia, & API’s Membership Liaison

**Originally published in the Fall 2007 Special Needs issue of The Journal of API

Hannah
Hannah

New Year’s Eve and New Year’s Day used to be uneventful times for my husband and me. Then, my daughter Hannah was born. The New Year holidays of 2004 etched permanent and vivid memories in our brains.

We had our beautiful newborn in our arms protesting at the top of her lungs. She had just spit up for the third time in the past half hour. Beginning that New Year’s Eve, we were awake for an entire 48 hours. Hannah was either spitting up or crying. She was very uncomfortable, in pain, and exhausted. We were sleep-deprived and mentally drained. This seemed to be our routine for the next month.

Mother’s Intuition

Something with this situation wasn’t sitting right with me. I knew newborns spit up, and I knew it was to be expected to not get much sleep, but it seemed like this was in excess. But then again, I was a new parent. I doubted my instincts and listened to those around me who said, “It’s just normal.” Continue reading Hannah’s Story: Infant Reflux

Jackie’s Story: Growing Up with PDD

By Kandace Wright

**Originally published in the Fall 2007 Special Needs issue of The Journal of API

Jackie
Jackie

Jackie informed me yesterday that when she has her own children she will never tell them “no.” Never. I smiled and wished her luck with that. Then, today after school, she informed me that she thinks she might sometimes need to tell them “no.” Sometimes.

Jackie is a healthy, mostly happy 11-year-old child with special needs. What makes her unique is that she has pervasive developmental disorder. She has some autistic features mixed with a possible mood disorder, though some days I wonder if her mood swings are more related to her approaching coming-of-age. I do not believe there can be anything more emotional that impending menstrual cycles for a young pre-teen. Sigh. When did I become the mother of a pre-teen?

About PDD

The diagnostic category of pervasive developmental disorders (PDD) refers to a group of disorders characterized by delays in the development of socialization and communication skills. Parents may note symptoms as early as infancy, although the typical age of onset is before three years of age. Symptoms may include problems with using and understanding language; difficulty relating to people, objects, and events; unusual play with toys and other objects; difficulty with changes in routine or familiar surroundings; and repetitive body movements or behavior patterns.

Autism is the most characteristic and best-studied form of PDD. Other types of PDD include Asperger’s syndrome (a high-functioning form of autism in children who generally have high IQs), Childhood disintegrative disorder (in which a child may develop fairly normally until 18 to 36 months and then begin to regress, especially in speech and social interaction), and Rett’s syndrome (a neurodevelopmental disorder found almost exclusively in females and characterized by normal early development followed by loss of purposeful use of the hands, distinctive hand movements, slowed brain and head growth, gut-associated lymphoid tissue abnormalities, seizures, and mental retardation).

Children with PDD vary widely in abilities, intelligence, and behaviors. Some children don’t speak at all, others speak in limited phrases or conversations, and some have relatively normal language development. Repetitive play skills and limited social skills are generally evident. Unusual responses to sensory information, such as loud noises and lights, are also common.

Practicing Attachment Parenting has enabled us to be more responsive and more intuitive to Jackie’s needs. My husband and I can often sense what she needs from us and her environment, which is key to our preventing meltdowns and struggles.

We also feel strongly that we help her by having a support system for us. We rely on a support team including family, friends, and people from the school system who work with Jackie. Sometimes we need respite care, an extra set of hands, or a parents’ night out. Our sitters are well trained to work with children like Jackie, and all of our kids look forward to the special playtime. We enjoy coming home relaxed and rejuvenated, and know we are in a better place to cope with any challenges that might arise.

Different is OK

One of the hardest challenges with raising a special needs child is trying to keep people, including us as her parents, from attempting to force her into being a “typical” child. Jackie is different. She will always be different, and I celebrate that difference.

That said, it’s not all roses. There are some thorns. We have struggled with defining what Jackie needs in her school environment. We have also struggled with therapists and psychiatrists who have tried a one-size-fits-all approach to Jackie’s challenges, including the use of medications.

A Trial of Medication

We resisted using any medications for a long time, despite the pressures. When we had our fourth child, things really bottomed out for her. She was in such emotional pain. We decided it was unfair to not at least investigate and try medications. We started out with high hopes, but soon realized that our daughter had become a proverbial guinea pig.

We tried half a dozen medications over the course of 18 months. I know some children receive relief from medication, but Jackie never did. In fact, they had a negative effect on her system and she seemed even worse. It was heartbreaking. We ended the experiment and weaned her off all medication.

Jackie hit a new low while weaning from the medications. Then, after a month, she seemed herself again. She became more in control of her emotions and behaviors, and her humor returned (something I hadn’t quite realized how much I’d missed). She seemed settled. I cannot quite explain it, but she just seemed more like the daughter that we knew and loved – quirks and all.

Two Steps Forward, One Step Back

It’s been about six months, and Jackie continues to improve. She takes two steps forward, then one back (sometimes three back), and then she makes progress again. She was recently able to transition from the special needs school bus to the regular school bus, which was an important milestone for her.

No matter how hard we attempt to prepare her to be confident with her special needs, as she gets older there will always be the pull to be more like a “typical” children. She will always want to be “normal.” We embrace Jackie as she is. We have taught all of our children that we are each unique, and we encourage them to be accepting of others, even those who face challenges that make them difficult to deal with.