Takeaways from Dr. Susan Barry’s Web Interview (School Crossings: How the System Lets Down Children with Vision Problems)

First off, I have to admit that I entered the web meeting eight to nine minutes late. This will be the opposite of shocking to anyone who knows me.

I was infuriated! I’d been anticipating this thing to a pathetic degree and just finished Dr. Susan Barry’s Fixing My Gaze, a godsend of a book for parents of children with strabismus. (Click here to listen to the NPR story about Sue.) Unbelievably, I was at my computer two minutes before the start time. And only then did I realize I had to download frigging webinar software, and this computer hates me and therefore refused to install it despite several admirable attempts. So instead of thinking about it for two seconds, I called Cody, who was on a walk with Stella so that I could have peace and quiet during the webinar. (Is “webinar” really a word? If so, it shouldn’t be. I hate it.) He said, with no annoyance in his voice whatsoever, “Use the laptop in our bedroom.” So I literally sprinted into our clothes-strewn cave of a room and logged on to an ancient IBM ThinkPad. Thank God it worked, or I would’ve thrown lamps and other breakable items in frustration. Pile of clothing, at least.

Anywho. My coverage, as promised…

By the time I got to the party, hosted by the College of Optometrists in Vision Development (COVD), Sue (I guess I’ll be cozy and call her that) was recounting some of the background laid out in her book. She had 20/20 vision in both eyes. So, in the standard vision tests they give in school, where you read a chart of letters (20 feet away) with one eye covered and then the other, her binocular vision problem went completely undetected. It’s not just because one eye was covered so as to avoid revealing the inability of her eyes to work together, but like Stella, her vision was pretty much fine from far away (say, 20 feet), and not so sharp within a few feet. Because the vision test didn’t reveal the source of her low test scores, she was labeled as a “dim bulb.” Literally. Teachers told her parents to accept the fact that their daughter had low intelligence.  Sue, neurobiologist and author Sue Barry, Ph.D., was placed in a “special needs” class with an assortment of children with widely varying impairments and diagnoses. Side note: Sue’s best friend was physically impaired by polio, though she said it was quite obvious his intellect was just fine. Sue never raised her hand to answer questions because she had no confidence in herself. Thankfully, her mother never, ever doubted her high intelligence, and Sue saw and felt that.

Of course, Sue’s mother did more than merely believe in her. She took action that contributed directly to Sue’s later success. She read to and with Sue constantly. More than that, whenever young Sue expressed excitement about or interest in any topic, she would come home to find that her mother had placed a perfectly chosen book about that very subject on her bed. A little surprise, an eagerly opened treasure. Reading was fun.

Sue explained why her mother’s efforts were so powerful. If a person anticipates a reward for an activity, brain activity is generated that changes synapses. By making reading to rewarding and enjoyable, Sue’s mother helped shape her brain! Despite the fact that her binocular vision problem made reading much more difficult than for most, she became a slow but competent reader. She found joy in it, which propelled her through the visual challenges. I wish I could give Sue’s mom a huge hug, and perhaps a parade. Honestly, read Sue’s book. That woman went to bat for her daughter. Much respect.

I have to add that Sue and the moderator further discussed the topic of how to encourage reading in kids who, as Sue did as a child, find it uncomfortable and difficult. For most kids with vision problems that make reading taxing (but not impossible), total avoidance of reading and reliance on books on tape isn’t the answer. They suggested that parents and teachers simply be patient, and take it slow. Start with less challenging material until their confidence and endurance increases. Provide breaks during reading. Small efforts like taking turns reading paragraphs with your child can make a huge difference.

After recapping how her childhood was affected by her vision problem, Sue delved into the story of a boy named Eric (also shared in Sue’s book). For a long time, no one knew Eric had a vision problem. Eric’s eyes looked straight. He could see well from a distance. Bu his vision was poor when looking at things close-up, which made schoolwork frustrating and aversive. As a result, Eric was a poor-performing and distractible student who was diagnosed with and medicated for ADHD! This unfortunate mistake wasn’t corrected until they happened to visit a clinic (for kids with ADHD) that offered binocular vision tests. Only then did they realize Eric’s true problem. According to Sue, following vision therapy, Eric has gone on to become one of the top students in his college class.

The moderator helpfully asked Sue to name any key studies or resources that she could suggest to parents. She cited two:

Reading Strategies in Mild to Moderate Strabismic Ambylopia: An Eye Movement Investigation (published just this year). Key finding: These kids have longer fixations and less accurate saccades.

Randomized Clinical Trial of Treatments for Convergence Insufficiency in Children (a study by the National Eye Institute). This trial resulted in recommendation of a 12-week course of office- and home-based vision therapy.

Note: Sue also suggested that parents visit COVD.org to check out their “Research and White Papers” and reminded us that the chapter notes in her book are full of references to the wealth of research and studies cited.

Because the point of this “webinar” was to empower parents and educators to better support children with vision problems, the moderator (again, very helpfully) asked Sue what activities she found most enjoyable as a child. My ears perked up. This is about building confidence, and focusing on strengths rather than worrying about weaknesses! But when I heard what she said next, as she began her answer, I got a tiny bit sad. Because she explained that ball sports were difficult and not very enjoyable at all, as they involved demanding eye tracking which requires coordination of the two eyes. She just couldn’t follow the ball, puck or other fast-moving object well enough. So, while it makes no sense and we really don’t know what Stella’s vision will be like or if she’ll even be interested in sports, I got a little misty. Maybe Stella won’t be able to play basketball. Or softball or tennis. Maybe she won’t get the same joy out of the sports that sustained me through middle and high school. (Sorry for the tangent.)

BUT. Sue said that less visually demanding sports like swimming and running (and I’ve heard ice skating is also a favorite of strabismic kids) were very enjoyable to her. In fact, she may’ve had an advantage. In Fixing My Gaze, Sue gives many examples of how the brain compensates for challenges in one area by building up abilities in other areas. That’s basically my lame-ass explanation of neuroplasiticity. In cases of injury or disability, the brain adapts to help us figure out new ways of doing things. In her book, Sue describes a key realization  during a vacation to Hawaii–she was far better at finding the way back to their accommodations at night, though a dark and winding path, than the rest of her family. She couldn’t rely as much on sight, and other senses were filling in the gaps (thanks, neuroplasticity!). Her mind seemed to note how her body moved and felt as it moved down the trail, and she was able to navigate easily and intuitively while her better sighted companions were lost.

Driving a car down the street was a whole different story, however. She was a terribly slow and unsure driver who actually designed her entire life around avoiding the activity. That was her prime motivation for beginning vision therapy–not a belief that she’d be able to see in 3D after 48 years of living in a flat world. After all, she’d been told that after early childhood, this type of correction was simply impossible.

Sue admitted that she often receives desperate emails from people with vision problems. They plead for help in figuring out a way to improve their vision, as past efforts have failed. Wisely, she pointed out that this desperation is a sure indicator that their current doctor is not listening and responding to their concerns. She urges people who feel unsupported and hopeless to find a new doctor right away. An easy way to find one who specializes in vision therapy is to go to COVD.org and enter your zip code in the upper right corner under “Locate a Doctor.” Only a real expert who specializes in binocular vision can help. In other words, you need a developmental optometrist, like the one we were lucky to find for Stella and through whom I found out about this interview with Sue. Hooray!

In the Q & A period at the end of the session, a listener asked if vision could regress following vision therapy. Sue paused a bit, and explained that beginning at age 48, she did vision therapy for one year. This entailed one day a week in the office of Dr. Ruggiero, and 30 minutes a day at home. While her vision has retained its dramatic improvement in the years since, she admits that she still does a small amount of vision therapy at home, just to be proactive. Sue noted that while adults can make amazing advances with help from to high levels of motivation and concentration, children are in a much more advantageous position. A child’s mind is more elastic, and her visual system still developing. For a young person, say, six months or so of vision therapy could very well do the trick, their eyes more quickly trained to work together and new mental habits more easily entrenched, quite possibly for life. With, perhaps, a tune-up here and there (in the form of vision therapy) as an adult.

It was clear to me during this meeting that Sue and her buds at the COVD are trying to get the word OUT! Not only in regards to better, earlier detection of vision problems, better support of children who have them, and awareness of the effectiveness of vision therapy, but also about the widespread belief that there is a critical early window for correction of vision problems associated with strabismus. As Sue put it, conservatively, “the ‘early window’ dogma is overstated.” Their shared hope is to educate eye doctors about vision therapy so that they will then “lay out options for their patients.” A booming AMEN to that.

In closing, I’m so glad I listened in. It helped me realize that I need and want more clarity on exactly what Stella is dealing with. I know she has accommodative esotropia, which is a type of strabismus, and has started down the path (at least) to ambylopia, hence the patching. But do anisometropia and convergence insufficiency also apply? They seem to, especially the former, but I’m not sure because no doctor has ever used those terms in regards to her. Knowing how these terms fit with Stella, or not, would help me interpret and apply what I’m learning. I’ll be bothering her eye doctor even more now. Thanks, Sue! Sorry, doc. (Not really.)

I hope my wordy recap was helpful to someone. That said, you can get all of Sue’s important findings and insights in Fixing My Gaze. As the cover attests, it’s a must-read for anyone interested in vision or our amazing, adaptable brains. Seriously, I have a new appreciation for my eyes and the contents of my cranium. Now if only I could make my keys stop disappearing….

Free webinar by Susan Barry: How the system lets down children with vision problems

Here we go again. Like tube feeding, vision is an area in which children aren’t getting the care and solutions they need and deserve. Stella just started patching, because her brain was starting to favor her right (strong) eye. And it’s already become clear (fun with puns!) that without extra effort and research on my part, her outcome, even though we are patching as directed, would be far less than optimal. Thankfully, I have the time and ability and insurance coverage to make it all happen. But I keep wondering, what about the many parents of children with vision and feeding tubes and other health issues who don’t?

Luckily for us anyway, three recent and perfectly timed events have made me feel that I’m on the right track in terms of how to approach Stella’s treatment…

1.) We recently chose a new eye doctor for Stella (our third opinion became our number one choice!) who emphasizes vision therapy in treating eye issues like Stella’s (conditions like strabismus, accommodative esotropia, ambylopia, etc. etc.). She was vastly superior to the others in terms of her attentiveness to Stella as a human being, her ability to do vision therapy with the very young (our second opinion did vision therapy, but said Stella wouldn’t be eligible for years), and her support and tips on how to patch successfully. Seattle Children’s Hospital? They just handed me some adhesive patches to stick on Stella’s almost-two-year-old eyes, with almost no explanation or and certainly no acknowledgement of how big a deal it was, noting only that patching is “not that bad.” Bullshit.

2.) I’m currently reading a ray of hope in paperback form, Fixing My Gaze by neuroscientist Susan Barry. She couldn’t see in 3D until her late 40’s (she had strabismus from early on, like Stella). The ability to see in three dimensions affects life in a myriad of ways, including the abilities to read, drive and play most sports. The book is as much about neuroplasticity as it is about vision, and I have found most of it fascinating (some of it a bit dense and technical and hard to follow). It has opened my eyes (the puns are too easy to resist here, sorry) in so many ways.

3.) Yesterday, I received an email from Stella’s new eye doctor telling me (and all her patients) about a free webinar being given by Barry, author of Fixing My Gaze, on Thursday. I was thrilled! The email, besides letting me in on a great opportunity to learn from a true knowledge leader in the field, confirmed that we’d found one of the rare doctors who can help Stella achieve her own personal best in terms of vision.

The meeting’s name pretty much says it all: “School Crossings: A Neurobiologist’s View of How Our System Fails Children With Vision Problems.” I was so thrilled to find out about this, and again, to get assurance that we’d found a wonderful doctor for Stella. One of the rare few who are truly informed about vision therapy, the kind that helped Barry see the world in full, volumous beauty.

I have only a basic understanding at this point, though it’s growing all the time. But most opthalmologists (including the one we saw at Seattle Children’s) and optometrists seem to heavily rely on patching (often alone) to address situations where the brain is favoring one eye, as is beginning to happen with Stella. When the vision imbalance is left untreated, blindness in the weak eye is likely. However, patching is not a real solution or adequate treatment for many, as upon completion of occlusion, the brain slowly reverts to favoring the same eye. Both eyes are strong after months or years of patching, or have equalized (sometimes the strong eye deteriorates due its suppression) but the brain has not learned to use the eyes together. Vision therapy is needed to get the formerly weak  (“lazy” or ambylopic) eye to coordinate with the  strong eye and create a complete, stereopic view of the world. Proper therapy often results in a long-term cure, enabling 3D vision and other vast improvements. So many children are having to settle for significant, even quality-of-life-reducing vision impairment when in fact, they could see major improvement or perhaps complete resolution of their issues.

Many doctors still believe that there is a small window in early childhood during which eye problems must be addressed, lest be rendered irreversible. Barry’s research and personal experience shatter this falsehood. For the benefit of children like Stella, Barry is shouting her discoveries from the mountaintop, and I am extremely grateful. On the other hand, as we recently embarked on the patching journey, which I was not expecting at all–I was truly blindsided (ugh, another pun?), the book has scared me and made me cry. It’s made me realize the full scope of how Stella’s vision and life experience could be impacted if she is not properly supported. Seriously, I’ve been listening to Celine Dion’s “That’s the Way It Is” and bawling, about once a day. And I’m not a Celine Dion type of person. I’m a Neko Case fanatic. But, “it’s an uphill climb and I’m feeling sorry, but I know it will come to you, yeah” kind of hits the nail on the proverbial, three-dimensional head. I’m working hard and it feels like, once again, there’s a lot on the line and if I don’t stay vigilant and question everything every doctor tells me, Stella will suffer.

Anywho, I’ve signed up for the webinar and encourage other parents of children facing visual challenges to do the same! Virtual “seating” is limited. I will blog about the talk here, in case you miss it. The details, from the original email announcement from the College of Optometrists in Vision Development (COVD):

School Crossings: A Neurobiologist’s View of How Our System Fails Children With Vision Problems
 
Hear Dr. Susan Barry answer questions about difficult school experiences that resulted from her vision problems; how, for example, she was mislabeled as a low aptitude student and assigned to a special problems class, and what her mother did to help her child succeed. And more….. including what you can do to help your child succeed!

TO REGISTER FOR THE MEETING:  Go to www.joinawebinar.com, fill in the meeting ID number 547-423-251 and your email address, click on “CONTINUE,” then fill out the brief form that comes up next and at the bottom of that screen be sure to click on “REGISTER.” 
If you have ANY difficulty registering or any problems during the webinar, contact TECH support for gotowebinar.com at 800-263-6317.

Click here to read the full press release, including more information about Susan Barry (aka “Stereo Sue”).

Taking a stand against tube-feeding crimes and negligence

Someone needs to say it: tube-fed children and their families are being neglected and often outright abused by a dehumanizing, misguided health “care” system.

If you don’t believe me, read on. Or at the very least, get a glimpse of a far superior alternative by viewing this tube weaning lecture delivered at Seattle Children’s Hospital by weaning expert Markus Wilken, during his visit from Germany. This video is an invaluable resource, which I highly endorse, as you’ll see at the closing of this overdue rant.

Our tube feeding days are far behind us, yet memories haunt us. Like the time I inserted Stella’s nasogatric (NG) tube into her nose, only to have it come out her mouth, instead of going down to the base of her esophagus as planned. Of waking up every two hours to feed her at night, fumbling in the dark with a stethoscope and large plastic syringe in order to confirm correct placement of the tube before setting up the pump to run for 45 minutes–desperately trying to stay awake while it ran, so as to be able to respond in the event of a pump malfunction or choking incident. The blood that, after the first month of tube feeding, consistently encrusted the tube in her tiny nostril. And, in soul-crushing fashion, the bottles of outrageously expensive Elecare, not covered by insurance, that Stella triumphantly downed on occasion, only to re-emerge in projectile fashion thanks to tube-triggered gagging.

Crazily enough, none of these incidents were the turning point for me. None of them woke me up to the immediate need for the tube’s removal. Though I did often wonder how long this would go on, as there was no plan for weaning. I was doing what I was told because it was supposedly medically and therapeutically necessary. I have another mother to thank for my awakening–a mother who didn’t see such a need and whose child paid a huge price.

Back when Stella’s little baby face was accessorized by medical tape securing a thin but lengthy yellow NG tube, we made one of many trips to Seattle Children’s Hospital. This time for an abdominal ultrasound. In the waiting room, two women struck up conversations with me about, what else, Stella’s tube. “She looks so healthy,” said one, whose child also had feeding issues and was headed toward a tube. Then she asked the inevitable question: “Why does she have a tube?” I explained, and we commiserated about the misery of trying to feed a child who simply does not want to eat. The other, with empty eyes and a tired smile for Stella, commented along the lines of, “My son had an NG tube until he was five. Good luck. She looks great. I hope you get her off of it.” Suddenly, my stomach felt as though it were full of rocks. In that moment, I sank to a very dark place. But while down there, I resolved to never, ever let that happen to Stella. I decided to fight.

So, just to make this astounding fact clear, I’ll repeat it: I met a woman whose son lived with a nasogastric feeding tube until he was five years old. Five years of a thick tube through his nose (no doubt causing nasal ulceration), his esophagus irritated, the sphincters held open (encouraging reflux), food administered on some dietian’s strict schedule and chart regardless of what he thought or felt. It’s a perfect illustration of why I’m so angry. Really, really angry. I have been for a while.

I’m outraged at the treatment that many tube-fed children and babies are receiving from doctors and therapists. G tubes, the next step after NG tubes (if eating does not progress) and a much kinder solution in cases of long-term feeding, are not without problems. They require surgery, which when not done properly can cause extreme suffering and even when correctly inserted can contribute to excessive vomiting. I believe that there are many children with G tubes that do not actually need them, and that if physically able but still unwilling to eat, they should be given a chance to wean before surgery is considered. At the very least,  thoughtful, individualized approach should be taken by an interdisciplinary team of doctors, as opposed to the reckless, disorganized decision-making that is now widespread.

Based on my experience with Stella, I’m particularly concerned about those with long-term NG tubes, tubes meant only for short-term use. It’s not okay. Scientific evidence (which I will present in a later post) and common sense tell us that NG tubes cause extreme discomfort and difficulty (slowing of) swallowing. The frequent removal and reinsertion of this tube is traumatic and damaging for child and parent. No matter what kind of tube is used, a complete disconnect with hunger and extinguishing of the desire to eat is practically inevitable. The tube itself fuels eating refusal and aversion, long after the initial issues prompting the tube’s insertion have been addressed. (This is very different from children for whom tube weaning is not an option at all and long-term tube feeding a clear life-saver.) Families are plunged into despair, their lives shrunk down by the oppression of tube feeding (though, sadly, this comes to feel normal for many families), the incessant vomiting, the stunted growth that the tube was supposed to prevent, and the hopelessness that arises due an absence of a weaning plan. Or any plan for that matter. For most of these children, there is no way out. This is, with no exaggeration, a crime.

And then there is the so-called “therapy” provided to these children. When I hear stories of children being force fed, and there are a lot of them, I literally become sick to my stomach. It’s wrong. It’s a disgrace. Yet it’s happening at leading clinics and children’s hospitals across the country. One of the barbaric techniques used: Puree is shoved aggressively into toddlers’ unwilling mouths, which are then held shut for as long as it takes. As long as it takes for them to swallow–and it can take a very long time to swallow when you are terrified of food. What horror! Stella’s occupational therapist noted that some “graduates” of such programs later have to be desensitized after enduring such trauma, the process of learning to enjoy rather than fear food begins again but on even shakier ground. How can a brute-force approach possibly help a scared child discover the joy of eating? It can’t. If the child does eat, it’s not because they want to. It’s because they have no choice and no other way to make the torment stop. The children are sometimes called “obstinate” by therapists and parents who buy into the crazy, unbelievably misguided belief that kids are refusing to eat because they are, essentially, being manipulative little jerks. The children are blamed, their trauma and autonomy completely disregarded. Parents are pitted against children, forced to play coercive games. This is absolute insanity.

There are far better ways to wean children from tubes, to awaken their appetites, hearts, and minds. These methods are infinitely more effective and humane. They are based on respect and compassion, which every child needs and deserves! Beyond that, every child for whom it is safe (mainly, the many tube-fed kids whose initial issues are resolved) deserves to be given a chance to eat. For many families, weaning is never even discussed! Because the child is not eating orally. But why would they? Why would they suddenly enjoy eating when every three hours, formula is pumped directly into their stomach, sometimes only to come back up again due to nausea and rampant overfeeding? When Stella had her tube, our pediatrician said she’d just “turn it around.” As if by magic. That was never, ever going to happen.

I’ve been perusing blogs and boards of parents with tube-fed children and my goal has been to offer support whenever I think my experience with Stella could be relevant. It feels good to provide support and resources, to help bring about positive change based on such a negative experience. But I’m not sure I can do it anymore. There are too many heartbreaking stories of renowned hospitals directing parents to disregard their instincts and squash the dignity of their child. It’s overwhelming. I’ll start to type a reply to certain posts, ones that reveal that a child is being forced to eat in some fashion, only to delete it, because my thoughts are all over the place. My words too angry.  I wonder where to begin. How can I convince someone that the entire medical establishment is harming their child on a root level, rather than helping? There is too much ground to cover, too much fundamental education and changing of minds to do–more than can be conveyed in a comment box. I’m at a loss.

I have such compassion for the parents, yet feel such angst when I see the failure to question the clearly ineffective and detrimental status quo. You have to stand up for your child. No one else will. You have to call bullshit on doctors’ cavalier attitudes toward tube feeding, not to mention their lack of actual knowledge on the subject. You have to challenge therapists whose tactics perpetuate the feeding battle, rather than bringing it to a peaceful end.

But I know. I know these parents are ground down by the stress, loneliness, and sorrow that comes with not being able to nourish your own child—the nightmare that is tube feeding. I know from my own experience that some parents become so desperate that they no longer trust themselves and find themselves willing to follow whatever directions they’re given, perpetuating their own hell, despite the nagging voice inside that tells them it’s all wrong. Or who are tossed back and forth from one expert “opinion” to another, with no one ever offering a real plan for moving towards normalcy and health. Parents are victims of unnecessarily extended tube feeding as well, and the failure to recognize the deep trauma of both parent and child, and how it contributes to disordered feeding, is another gaping hole in the “care” received.

I have by now heard about, and even helped in some small way through this blog to bring about, dozens of successful tube weans. I know some children require tubes for survival. But many others are simply trapped with no visible exit. In particular, I am intimately familiar with three tube weaning success stories: that of my daughter Stella, and those of Zander and Heath, the children of women who have become dear friends. These amazing triumphs were achieved thanks to parental intuition, constant and fearless questioning, and plain old ignoring of bad medical advice, plus exhaustive research and the shaken but intact inner belief that if given a chance, “my child can eat.” These weans required a lot of belief and trust in the child, not the doctors. They required a process of “letting go.” This is hard to do, not only for parents, but for a broken health care system that insists on monitoring and controlling every milliliter pumped through the tube, in order to cover its ass, all while ignoring the impact on quality of life.

Thankfully, there is an alternative, explored in the video below. Upon viewing it, I cried. They weren’t happy tears in response to the wonderful, validating, rare, evidence-based wisdom on tube weaning that the video unveils. I bawled because the speaker, a child psychologist and tube weaning expert from Germany, describes a higher, enlightened quality of care given to children in his country—a standard and mentality that simply does not exist here. Unexpectedly, I was overwhelmed with grief. By and large, Stella did not receive the respectful, mindful, effective and individual care that she deserved. And thousands of children are needlessly suffering right now.

If you’re angry too, looking for a way out of tube feeding, or want to follow your desire to treat your child with more compassion during their feeding journey, please grab a cup of coffee and watch this eye-opening, heartening lecture given by child psychologist Markus Wilken. He has past, direct experience with the Graz method, which he’s incorporated into ongoing weaning and tube management work in hospitals and clinics in Germany. Astoundingly, Markus has successfully weaned a diverse set of over 400 children. Perhaps, within his presentation, you’ll find the encouragement you need to believe in yourself and your child. To live a tube-free life! You can do it. Your child can do it. It’s time to fight.

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Here’s the link (some find that removing the “mms” prefix is necessary for successful viewing):

mms://seattlechildrens.wm.internapcdn.net/seattlechildrens_vitalstream_com/Rehab_5-27-10.wmv

Hooray for Heath, his mom, and inspiring tube weaning success!

Mighty Heath

Meet Heath. Ain't he sweet?

Remember Zander? Well he’s got company. (The tube-free ranks are growing.)

Sadly, I kept putting off this post because the hugeness of the triumph deserves a truly well written, heartfelt description. Which takes time and energy that I’ve been lacking, though I’ve so wanted to muster it! But then I realized that I can’t tell the story any better than Jenny, Heath’s mom, an incredible writer and an amazingly intelligent and unstoppable mother. So I’m just going to give you the highlights and point you toward the blog that documents Heath’s journey: The Crunchy and the Smooth.

Heath is 15 months old and was 100% tube fed until a couple weeks ago. The need for his g-tube (gastrostomy button) was prompted by his difficult birth and the immediate, medically intense aftermath. The fly-by overview, in Jenny’s words: “cord wrapped tight around his neck, Apgars of 0, ambulance transport from a country mouse hospital to a city mouse NICU, diagnosis: hypoxic brain injury.” As the result of many necessary and lifesaving but overwhelming and traumatizing medical procedures that took place in the area of his nose and mouth (mainly intubation and suctioning), Heath developed Posttraumatic Feeding Syndrome. Until recently, to defend himself from further invasions, he batted away any food presented to him. He was scared, and who could blame him? The answer, his parents realized, was to build trust, apply no pressure, and to let him feel hunger and interact with food on his own terms (play picnics, for example).

I want to pause here and clarify, because “brain injury” is vague and doesn’t paint an accurate picture of Heath. While motor areas of Heath’s brain suffered injury during his birth, Jenny explained to me that his brain is repairing itself thanks to the amazing processes enabled by infant neuroplasticity. The ongoing repairs are evident, as I’ve noticed leaps in his development in the short time I’ve known Heath.  Anyone who lays eyes on him can see that he is thriving in every way. He  is one of the happiest, sweetest, most engaged and engaging babies I’ve ever met. He’s got a sense of humor. He communicates and makes friends easily. His weight is great. He’s meeting developmental milestones a little later than most, but he’s getting there–at his own happy pace (just like all babies, really). Of course, his mother has sought out various ways to support him in his physical development, including occupational therapy, movement sessions and even yoga–and he’s way better than me, seriously.

After much research, various forms of therapy, eye-opening revelations, and inspiration from the Graz model, an intensive wean was planned. The journey began on May 9th, with hands-on support from Dr. Markus Wilken, a psychologist with specialized expertise on feeding adversity. He came to the U.S. to help wean Heath as well as two other tube-fed children, who began eating faster than anyone expected! (You can read about Kai and Rosie’s simultaneous weaning successes at The Crunchy and the Smooth, as well.) Over his career, Wilken has helped wean more than 400 children from their feeding tubes.  He leads the tube weaning program at Princess Margaret Hospital in Darmstadt, Germany and together with Martina Jotzo runs The Institute for Psychology and Psychosomatics of Early Childhood.

Jenny’s blog has all the weaning specifics, but I’ll say that it’s been quite a ride (as in nauseating ups and downs) for Heath and his parents, as most weans are. But, with no doubt, the weaning effort has been successful. The progress Heath has made is staggering. In short, and I am in complete awe though I never doubted he could do it, Heath has become an EATER. He is enjoying a diverse array of foods, with more and more being added to the menu each day. I’m smiling because Heath’s life is forever changed. And because any parent of a tube-fed child who reads this will experience the sensation of their heart doing a back flip within their chest. Brave Heath is going to help so many babies and kids escape from the limitations, pain and decreased quality of life (for the whole family) that comes from extended tube feeding–not just the physical and psychological effects of the tube itself but from the anxiety and helplessness of tube feeding with no end in sight, when your child has (often after much hard work, therapy, recovery) the ability but not the willingness to eat. The parents who stare into a proverbial black hole whenever they ask doctors or wonder to themselves about whether their child will ever be able to eat–they will discover hope in Heath.

To say that Heath’s mom deserves credit is such a vast understatement. The roller coaster ride she (and her wonderful husband) have been on since his birth, when Heath literally had to be brought back to life and the 35 terrifying days in the NICU that followed, is a testament to not only her strength, but her inestimable love and grace. I know why Heath smiles so much.

Practically speaking, this very smart woman is an accomplished journalist. You can tell by the quality of her writing–and the research and outreach to experts across the globe that she executed in her quest to empower Heath with the gift of autonomy and the joy of eating. So, parents of tube-fed children, please check out her Resources Page to hit the jackpot in terms of insights and data and all kinds of valuable, rare informational gems on the topics of tube weaning, tube feeding and associated trauma.

To everyone reading this… I hope you’ll go to The Crunchy and the Smooth and post a few cheerful and supportive words in the comments section. Heath has come a long, long way, but there is still patience and perseverance required by this family as they follow Heath’s lead and adjust to a whole new paradigm.

To Heath, Jenny and the man known as “Peanut”…  big love, loud applause and quiet, awestruck respect from me, Stella and Cody. Enjoy every lick, bite and gulp! (We know you will.)

Confident Mom Interview #3: Lenore Skenazy of Free-Range Kids

Lenore Skenazy, Free-Range Crusader

Do you remember the media hubbub from a couple years back, when a woman labeled by some as “America’s Worst Mom” let her kid ride the NYC subway all by himself? I thought so.

I chatted with Lenore Skenazy of Free-Range Kids one recent Sunday afternoon as she made chicken soup from scratch—and no. Sadly, I didn’t think to ask if the chicken was free-range.

On April 1, 2008, Lenore wrote a column for The New York Sun: “Why I Let My 9-Year-Old Take The Subway Alone.” She never imagined that it would land her on just about every talk show under the sun. Ever since then, she’s been taking hits and garnering praise as the bold leader of the free-range parenting movement.

She’s painted as a renegade in the media, but the woman I got to know over the phone seemed more like your average, concerned mom, just doing her best to stay sane like the rest of us. The only difference? She thinks the anxiety parents face today is out of control, detrimental, and largely out of place. And she’s doing her best to fight fear with fact, as seen in her book, Free-Range Kids: Giving Our Children the Freedom We Had Without Going Nuts with Worry.

Lenore certainly has some avid detractors. But to me, her message rings true.

The purpose and principles of free-range

I asked Lenore to quickly define the parenting style she’s helped champion, and the well-worn line rolled off her tongue. She called it “an old-fashioned approach to parenting that lets us give our kids the freedom we had.”

More explanation can be found on her website: “…we believe in safe kids. We believe in helmets, car seats and safety belts. We do NOT believe that every time school age children go outside, they need a security detail. Most of us grew up Free Range and lived to tell the tale. Our kids deserve no less.”

Her parenting approach, by the way, isn’t based on a hunch. Or nostalgia or laziness. It happens to be backed by a lot of research, which can be found throughout her book. Lenore points to the crime rate as a prime example. It’s much lower today across the board than in the 1970’s, yet kids have less freedom and parents more fear than ever.

Free-range, but not necessarily organic

Lenore has two boys, now 11 and 13 years old. I asked her if she was free-range from the start, when her first son was born. Her very honest answer surprised me.

“No, not at all!” She explained that while she’s an advocate for free-range parenting, she isn’t always able to put everything into practice. She recalled an incident from when her oldest son was one. He was in his car seat, with Lenore and her mother-in-law sitting by him, and her husband driving. “The boy was crying. My mother-in-law said to give him a bottle. I was like, ‘No! I can’t give him a bottle! What if the nipple lodges in his throat?’” She laughed, recalling how in that moment, she trusted all the baby books she’d read, rather than the common sense of her mother-in-law, who’d raised three kids.

Lenore acknowledged, “It’s hard to take a step back from the culture.” But there was something that came much more easily to her than it does to most people: “Trusting strangers more.” Lenore credits this trust to 20 years as a reporter in New York City. “I’m always talking to people in different neighborhoods from all different backgrounds. And everyone’s been great. I really do trust people… and I always felt like if you go into a Starbucks and you have to go to the bathroom, you can ask someone to watch your child.”

She realizes that this is radical stuff to many parents today. Because to so many of us, a stranger is “a predator until proven otherwise.” Luckily, according to Lenore, actual statistics don’t support this bummer of a belief.

What worries the anti-worry guru?

Based on what I’d read about Lenore, I knew there were a lot of things she didn’t worry about: her young son riding the subway alone, for starters. So I wondered, what does the free-range generalissimo worry about?

Lenore sighed, and the list began. “I’m worried right now that my sons aren’t reading enough.” She also worries about their level of communication or lack thereof—especially in regards to one of her sons in particular. “I asked him, ‘what’d you do on your camping trip?’ and he said, ‘Stuff.’”

She admitted, “I worry about their dependence on electronic amusement. Should they not be on the computer? Are they eating too much junk food? Are they nice to their friends? Do they have friends?”

Lenore paused and remarked, “The idea that I’m not a worrier cracks up me and my sister. We are such worriers.”

“I don’t come from pioneer woman, cavalier background,” Lenore continued. “I grew up with a stay-at-home mom.” Yet, she pointed out that her “child-focused” home environment never neared the “level of paranoia about the world that has been foisted on parents today.”

Keeping free-range kids safe

Lenore may be a legend among free-range parents, but she’s very concerned about safety. When her youngest son turned ten, he had a football-themed party. The sole item in the goody bag? A mouth guard.

Free-range parenting isn’t a free-for-all for kids. She explained that, of course, “You’re responsible for them. You teach them how to cross the street. You teach them to be where they say they’re going to be.”

Lenore stated her belief that, no matter how many people are placed on the sex offender registry, “It’s safest to teach your kids to say no to whatever creeps them out,” and to make sure they know that they can always tell you. Lenore emphasized that it’s absolutely crucial to say to them, “I won’t be mad at you.”

“It’s incredibly important to keep the line of communication open. That’s going to help them a lot more than telling them don’t talk to strangers and keeping them inside… Besides, most sexual predators are people they know.”

According to Lenore, the most important message to kids isn’t “Don’t talk to strangers,” but, “You’re allowed to say no and you should tell.”

The goal, she says, is to build confidence in kids. “The confidence to say no—to predators or bullies—comes from doing things in the real world and feeling pretty good about yourself.”

Nothing to fear but fear-mongering?

I’ve often wondered, in regards to myself and other parents I know, “Why we are so scared?” So I asked Lenore to explain the forces undermining parental confidence today, and why the free-range mentality doesn’t come naturally for most.

This is Lenore’s hot button issue, and I could tell by the way her voice changed—slightly higher and faster—when she responded. This is clearly an area she’s studied in-depth, and in her educated opinion, it boils down to “media saturation” and the “safety industrial complex.” Profit-driven messages are messing with our vulnerable parental minds.

The Law and Order phenomenon, she explained, sears graphic images and story-lines of victimization into our brains on a near-daily basis. Coincidentally, Law and Order went on the air in 1990, in the period when parental and general fear was soaring to new, paranoid heights. Our parents simply weren’t bombarded with terrifying and disturbing stories and imagery of sexual and physical violence in the way that we are today, which helps explain our more fearful, mistrusting mindsets.

Lenore said that when you follow the trail of fear, it leads directly to a giant dollar sign. “It all comes from the money to be made via advertising on TV or money made in selling products.” Parental fear is profit-driven, from TV ads to “class-action lawsuits about a drop of lead in Barbie’s eye.” Take a closer look at all the protective measures that at first seem instinctual, “and there is money behind it.”

Lenore highlighted a few products that may seem innocuous at first glance: knee pads, infrared baby monitors, and bath water thermometers. She noted that their very existence and widespread availability have heavy implications for parents. The message: You aren’t capable of keeping your kids safe without the help of products from more knowledgeable companies and experts. For that reason, it can be very hard to walk away from Babies ‘R Us feeling remotely confident as a parent, unless you spend a lot of money.

She explained that the knee pads imply that your baby isn’t safe even when doing a fundamental activity like crawling. The bath water thermometer suggests that “you’re about to scald your child.” The infrared monitor tells us, “At no time is your child is safe and sound.” Lenore pointed out that until recently, when your baby was asleep, you could take a break and “breathe a sigh of relief.” Parents today are afraid to let down their guard for even a minute, and it’s exhausting.

Lenore sees these products and their relentless proliferation and promotion as posing a fundamental question: “Don’t you care enough to save your child?” Of course, our instinct as parents is to say yes. And we spend a lot of money in order to do so. But no purchase is ever enough to take away the fear that has been planted.

My jaw dropped when Lenore told me about perhaps the worst fear-based money-maker she’s ever seen–an ad for a GPS device that’s also a 911 phone. In this short commercial, a kid is lured away from his bus stop by a remote control car. The next thing you see is the kid in the trunk of a strange man’s car, followed by a highly suggestive scene in a dark alley. If you watch closely enough at the end, when a SWAT team arrives to rescue the boy, you’ll notice that the stranger is pulling up his pants. I wish I were kidding. Honestly, I’d hoped Lenore was exaggerating. She wasn’t. See for yourself, but don’t say I didn’t warn you, and don’t take their misleading stat at face value:

Yikes. No wonder fear is so rampant, Lenore commented, despite the fact that crime is down, child abduction is rare, and that when abuse and kidnapping does happen, it’s usually at the hands of an acquaintance or estranged parent.

Lenore pointed out that whenever something does happen to a child, from a bump on the head to something more serious, parents are attacked or blamed to the fullest extent possible. She lamented, “We’re so afraid these days. Fate used to be part of the bargain. Now, anything that happens to the kid isn’t blamed on fate, it’s blamed on the parent. ‘Why did they let her eat that grape? How did they break their arm?’ It’s all traced back to negligence on parents. We’re blaming them because we’re scared and if we can distance ourselves from that parent’s disaster, it gives us a sense of control.”

Lenore added, “Our litigious society makes it seem like everything that happens has cause or blame.” In other words, there are no accidents anymore. It’s always somebody’s fault.

“Everything is now seen in terms of cause and effect. If we turn our backs for a second, then we will be blamed.” As a result, we’re always looking for possible ways our kids could be hurt, and willing to spend money on products—previously non-existent or considered unnecessary—claiming to protect them.

It’s hard to be a confident, free-range parent today because our commercial culture is constantly feeding our fears.

Sheltered kids lack coping skills

Lenore explained that today, some college administrators refer to incoming freshman as tea cups, “because they’re so delicate.” Sure, they’re “beautiful and perfectly made” but take them out of their protected display case and they break. They don’t stand up to everyday wear and tear, because they’ve always been shielded.

Lenore noted that college students are using mental health services in record numbers. “More college kids are depressed now than during the Depression,” she said.

“The point is,” she continued, “self reliance doesn’t just spring up out of nowhere. Sometimes you have to figure out your own route home because you missed the bus and can’t get a hold of your mom.” Unfortunately, most kids are bailed out and don’t get the chance to build confidence by overcoming obstacles.

How to worry less? See adversity as opportunity

I asked Lenore what she’d say to a parent who wants to stop worrying, but can’t let go. She said that parents need to take the pressure off of themselves. When her best friend read her book, she told Lenore how much she appreciated “whole chapters telling you to relax.” The fact is, Lenore explained, “Not everything you do has a big impact on your child’s development.”

“It’s a big relief when you realize it’s not all up to you. Not every synapse is up to you to connect in the brain. Not every day has to be perfect. They’re going to fail and that’s probably good in the long run.”

Lenore believes that when adversity strikes, we as parents have the opportunity to say, “Okay this is the punch, and now we learn how to roll with it… Life isn’t going to be perfect. The sooner they realize it, the better they can handle it.”

As for a specific strategy to get nervous parents started, Lenore suggests leaving your cell phone home for a day, giving your child the opportunity to problem-solve on his or her own. (More concrete free-range parenting ideas can be found in the FAQ section at Free-Range Kids.)

It’s a wide, enriching world for free-range kids

I asked Lenore to think of an incident—something her kids said or did—that affirmed her free-range parenting style. I wondered if she’d seen behavior that let her know that the freedoms she’d given them were fruitful investments in their character.

She thought for a minute, and then perked up. She explained that her youngest son takes the subway to school and transfers in Manhattan. Along the way, her son has befriended, as Lenore put it, “the guy who gives out free newspapers.”

The man’s a fixture at her son’s stop. “The guy has been through some hard times,” Lenore said, adding that he’s likely been “homeless or incarcerated… and doesn’t want to see my son go the same route.” This man has not only become a friendly acquaintance of her son, he’s become interested in and invested in her son’s future.

In fact, this man wrote her son a letter, amounting to a pep talk on paper, urging him to stay the course in life. He also gave her son a book about John F. Kennedy, meant to inspire.

Lenore shared her feelings on the unusual relationship. “It made me proud that he [Lenore’s son] connected with another person, that the person is looking after him… and that the man feels good about it.” Lenore, the seasoned reporter, couldn’t help but add, “And it makes me happy that my son reads the newspaper.”

Lenore is delighted to see that her son is “not writing people off because they’re a different color or poor or hard up.” It’s just one of many lessons he’s free to learn.

Support and community for parents of tube-fed children

Trying to wean your child off of a tube? Bravo! You’ll find comfort, resources, and encouragement in this online support group:

Tube Fed Children Deserve to Eat

It’s a social network powered by Ning Grouply, with the purpose of “Connecting Parents of Children with Tube Feeding Issues.”  There you will find a wealth of information and wonderful people who are all going through (or have been through) your stressful situation!

Best of luck to you!

Behold: Tube weaning research and guidelines

Invigorated by our walk

Back in her tube days.

When is the last time a research paper made you cry? Around the time of Stella’s wean, and since then, I’ve come across information that moved me on many levels. I’d like to pass along these sought-after papers to as many parents (of children and babies with feeding aversions and NG tubes or g-tubes) as possible.

Supremely helpful insights and guidance are offered in the article, “Prevention and treatment of tube dependency in infancy and early childhood.”

Details and analysis can be found in the research paper itself: “Standardized tube weaning in children with long-term feeding-tube dependency: Retrospective analysis of 221 patients.”

Update: Also, from Spectrum Pediatrics in Virginia, check out this pediatric feeding tube weaning case study! This case study breaks down exactly how a well-managed and supported wean takes place.

It is with great excitement that I share with this research on tube weaning. When Stella’s NG tube was placed, I immediately started researching the topic online and only found horror stories. I went into full-on panic mode immediately, because there was no helpful information. No hope. Only desperation and despair.

This is now.

Lean but healthy, and happily eating, just months later.

These resources seemed to illuminate our world, bringing light to what was previously a dark informational void. They completely validated my feelings and my husband’s feelings–our whole struggle, our crazy experiences, our obsession–surrounding Stella’s feeding aversion and tube placement. It’s fair to say that in this case, reading was healing. It’s so helpful to understand how calories are reduced and what a respectful, child-centered wean looks like.

Why are these papers such a big deal? Because so little research on tube weaning exists, and therefore most parents and doctors are really just “winging it.” Yes, some children require tubes for long-term survival and the authors of these papers fully acknowledge this, of course. But many children who are capable of eating on their own, whose core feeding or other issues have been addressed but who remain *unwilling* to eat, are tube-fed for years, which needlessly and often dramatically lowers quality of life and impairs development. There’s a better way, and we need to spread the word.

Children and their parents are sent home from the hospital with feeding tubes in place, but without anything resembling a clear time-frame or plan for tube-feeding, and certainly no plan or support for weaning. Children and families deserve better than that.

I find these two excerpts from the tube weaning article and research to be particularly powerful:

“Tube dependency is a distressing and unintended result of tube feeding in infancy. The condition of tube dependency can be defined as active refusal to eat and drink, lack of will to learn or the inability and lack of motivation to show any kind of precursors of eating development and eating and drinking skills after a period of gastric feeding. It is characterized by overt disinterest, food avoidance and active refusal, gagging, vomiting, oversensitivity, fussiness and other oppositional and aversive behavior. It may influence the quality of life of the affected infants and their families to such a degree that all other troubles fade into insignificance besides the nightmare of a child who will not eat or drink. Nevertheless, tube dependency is not recognized as a problem by many pediatricians.”

“Parents of tube-fed children feel unhappy about their plight. If the duration of tube feeding exceeds the predicted period of time, they will wish to start tube weaning but lack the means to do so. A vicious circle of insecurity and desperation may result. Pressure and adult expectation build up, causing the child to resist any steps towards autonomy. Parents report feelings of anger, guilt and sadness at the sight of other children eating normally. In earlier studies (Lit 42,43) we reported that 86% of parents of tube-fed children suffered from overt depressive symptoms that disappeared after their children had begun to eat normally.”

The following excerpts should give you a quick, high-level view of the study (its purpose and outcome) as covered in the papers:

“Results: 203/221 patients (92%) were completely and sufficiently fed orally after treatment. Tube feeding was discontinued completely within a mean of 8 days, the mean time of treatment was 21.6 days.”

“The rationale for this retrospective study is to specify a successful tube weaning program in infancy. Many children remain tube dependent after successful healing of their underlying disease. Tube dependency often is accepted as ‘unintended side-effect’ of the treatment.”

“The main hypothesis of the study is: specialized treatment is highly effective and allows weaning severely impaired children even when numerous previous attempts had failed. The primary objective was complete weaning from long-term tube feeding based on sufficient, self-regulated oral intake.”

“The most important point of the model is the concept of full oral autonomy of the infant from birth and the implementation of this concept into the daily handling of parents and caregivers dealing with eating disorders, feeding disorders and tube-fed infants. Hunger is the main motivation for the attainment of self-regulated eating behavior.”

“[Tube] Placement must be preceded by clear criteria and a decision as to the indicated nutritional goal and time of use. The placement of a temporary tube must generate a plan covering maintenance issues including time, method and team for weaning. Aspects of tube feeding that go beyond purely medical and nutritional issues need to be considered in order to minimize the frequency and severity of unintended tube dependency in early childhood.”

In Spectrum Pediatrics’ detailed case study, you’ll see many references to honoring and respecting the child and being attentive to the child’s cues. The goal is to allow hunger while minimizing stress, and to create a situation wherein the child chooses to become an eater by mouth:

“The team members utilized intuition and developmental knowledge in order to read the “cues” of the patient to know what the child wanted to eat, as well as with whom and where. All of the eating scenarios were very relaxed and focused on fun and play. The tube weaning program team members were cognizant of ensuring an eating environment that was comfortable and low-anxiety. If the child was ever afraid to eat, the therapists and parents would return to enjoyable play activities. He was able to cope with his post-traumatic feeding disorder and its negative effects through play in the low-stress, enjoyable environment.”

“The patient continued to exhibit changes in his hunger and sleep cycle on the third and fourth day of the tube weaning program. He had difficulties with sleeping based on his new sensations with hunger and self-regulation. The team continued to make the eating situation as comfortable as possible for the patient by “following his lead”. This led to feedings of his most desired foods and in a variety of locations, including outdoors, indoors, on the floor, in the bathtub and in the car. The team also continued to provide water-dense foods, such as melon and cantaloupe, in order to ensure that he was keeping well hydrated. It was evident that he was growing in his familiarity with new sensations, foods, and oral motor skills.”

I hope these resources are as helpful to you as they were to me! Best weaning wishes.