Wonder

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“Doctors have come from distant cities just to see me. Stand over my bed disbelieving what they’re seeing. They say I must be one of the wonders of God’s own creation. And as far as they see they can offer no explanation… Oh I believe Fate smiled at Destiny. Laughed as she came to my cradle. Know this child will be able. Laughed as my body she lifted. Know this child will be gifted. With love, with patience and with faith she’ll make her way.”

–Natalie Merchant

I am not sure of when it was that I first heard Natalie Merchant’s song “Wonder”, but each time I do hear it, it resonates deeply with me and I feel incredibly witnessed and uplifted.

In the early morning hours of my birth, the doctor gravely informed my parents that he had little hope for my survival. He actually discouraged my mother from naming me, in a misguided effort to help her accept the inevitable. I was born with a rare genetic skin disorder, Congenital Ichthyosiform Erythroderma (CIE). I made my first appearance on earth encased in a collodian membrane  – a tight outer layer resembling plastic wrap, looking as my father loves to say, like a “shiny red sausage”. The doctors didn’t know what to make of me. They had no name for my symptoms, no explanation for my appearance. But their worry about my skin’s ability to provide a sufficiently protective barrier led them to believe that I would not survive.

 

I spent one month alone in the hospital, as doctors searched high and low for a diagnosis. Parental visits were discouraged. They finally suggested that my parents seek an answer at a larger children’s hospital. My parents held me for the very first time in the back seat of the car, as their friends drove them the hour and a half to New York City. Another month passed before I was discharged, still without a diagnosis. The hospital cautioned my parents that the road ahead would be a rough one, and they highly recommended that my family employ a full-time nurse to see to my complicated needs. My mother balked at this. “I’m her mother,” she said. “I am the only nurse she needs.”

 

My diagnosis came soon after, when Dr. Charles Sheard, a dermatologist in Stamford, CT, observed that I appeared to have the same symptoms as one other patient he had read about in some obscure medical journal. Dr. Sheard took me on as a regular patient, seeing me once a week for the first year of my life, then monthly, and as I continued to grow and develop, annually throughout my teen years. He never charged my parents a dime. Although I suffered some complications and hospitalizations during childhood, my health stabilized and I have grown to live a full and rich life with few limitations. When dermatologists examine me, they remark at the seemingly mild case of ichthyosis I have, compared to other patients whose condition hugely impacted their development, mobility, and appearance.

 

I did, however, struggle with post-hospital trauma in the form of sleep disturbances, sensory issues, and severe separation anxiety. Then came the bullying in school. But I had several resilience factors at play in my life. I grew up listening to my parents tell me stories of my early health challenges, referring to me as a survivor and a fighter. My mother too was a fighter and fierce advocate for my medical and emotional needs throughout my growing years.  It should come as no surprise that I became a child life specialist as an adult, advocating for the emotional and developmental needs of children facing illness in hospitals and their communities.  Natalie Merchant’s song “Wonder” reminds me of the miracle of my birth and life, how I surprised the naysayers, and how my mother saw the possibilities and joy in my birth and life more than the dire prognosis.
To learn more about the many forms of icthyosis, check out the Foundation for Icthyosis and Related Skin Types.

Frightened Teens: Supporting Your Adolescent in Scary Times

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Another Shooting.

It takes all of our strength as grown-ups to not give in to despair, anxiety, and fear in the face of yet another young person accessing an assault rifle and murdering his peers. School is supposed to be a safe place for all children — teens included.

As the political debates about gun control make our brains feel like exploding, we have to remember to reach out to the adolescents in our care. If it is that tough for us to wrap our heads around, how much harder is it for teens? We must be proactive in engaging teens in conversation every day, about life, about what is important to them, and about the awful things that happen in the world. When something truly terrible happens, it is even more important to take the time to listen, witness, and validate their struggles. And this often means admitting that we don’t have the answers.

Teens have the capacity to reason, to wrestle with abstract concepts, and to articulate their feelings. But their brains are still developing, as is their self-concept, their ideas about who they are in the world. A random act of extreme violence will shake their new identities and burgeoning belief systems to the core, and they need calm, kind adults to prop them up as they try to make sense of their new reality. They need to know what to expect as much as possible, who they can count on. We know it isn’t always easy, so here are a few tips from the experts.

Tips For talking with Teens

What Mental Health Experts say to Their Kids

Fear and trauma responses can sometimes look like anger and disconnect. The teen who is suffering the most, without the ability to articulate and share their feelings, may be the one who needs your best efforts. Often teens find it easier to talk about tough topics when they are involved in an activity. Consider a cooking project, or gathering some art supplies, maybe magazines for collage. Or how about the ingredients to make a mini volcano? As you create something together, you can talk about how the shooter was a volcano waiting to blow, and how many feelings are often seething underneath. The teen can write down questions they have about life or list things that make them feel like blowing their top, and these items can be folded and put into the volcano before you set off the eruption together.

Volcano!

Introduction

This technique helps release anger through a structured activity providing an opportunity to discuss anger and to problem solve. It works well individually and in groups with preschoolers to teens.

Materials

  • Small paper cup or medicine cup (Dixie brand bathroom cups work great)
  • Plastic cereal bowl
  • One container of Play-Dough (The kind that comes in a 4-pack) or homemade.
  • White vinegar
  • Dishwashing liquid
  • Baking soda
  • Red and yellow food coloring
  • Teaspoon

Activity

  • Place a small paper cup upright on top of an upside-down plastic bowl. Secure it with a few pieces of tape.  Wrap it in play dough to make a volcano, leaving the mouth of the cup open.  Pour ¼ cup white vinegar, two squirts of dishwashing liquid, and several drops of food coloring into the “mouth” of the volcano.
  • If the child wishes, they can write down or dictate things that upset them (make them scared or angry or mad) on tiny pieces of paper and place them in the volcano.
  • Spoon in a heaping teaspoon of baking soda and watch the eruption!
  • For instant replays, alternate adding a little more baking soda and vinegar. A group can make a larger volcano using a large salad bowl and more playdough. Miniature people, animals, and props can be added to add aspects of dramatic play.

 

 

 

 

 

Why Aren’t We Preparing Kids for Disaster

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Beal_Photo_sm Guest Blogger Heather Beal is a military veteran with 23 years of crisis management and operational planning experience that she draws upon daily in her battle to raise two well-prepared, happy, curious, and intelligent children. As a trained emergency manager and parent, she saw the need to provide age-appropriate disaster preparedness information to young children in a way that empowered rather than frightened them. She is currently writing additional books to cover a greater spectrum of potential disasters children may face.

“Generally speaking, we do not prepare our children for disaster. We make them hold our hand in the parking lot and talk about the dangers of getting burned by the stove, but we stop short of this really big “disaster” word. When I think about it, I can come up with a few excuses we call reasons as to why we don’t give this topic the attention that we should.

First, like our children, (but usually without donning the superhero capes and masks), we believe that we are invincible. It (the disaster) can’t happen to ‘us,’ it only happens to ‘others.’ Folks – look at Hurricane Harvey, Superstorm Sandy, Hurricane Katrina, the Indian Ocean Tsunami, and any other number of disasters. With that many people affected – the ‘us’ and the ‘others’ are the same people. We need to look at disaster as a probability, not a possibility.

Second, we think talking about disaster will be too scary. I get it. No one wants to tell children anything bad could happen. We all know our children could get terribly hurt running if hit by a car in the parking lot, but we don’t get into explicit details about injury and death. We do however, talk to them about being safe, making good choices, and not doing things that could more likely result in their getting hurt.

We should approach talking about disaster in the same way we approach other learning topics or the consequences of actions or inaction. We don’t need to focus on the destruction a tornado can cause, how their lives could be uprooted, or what other things could dramatically change. We can however, talk about what children need to do to stay as safe as possible.

There are no guarantees in life for anything. We can’t guarantee that a car in the parking lot won’t do something stupid, just as we can’t guarantee the tornado will miss a child’s house, school, or childcare. But we, as parents, as childcare providers, as educators, as caregivers, as emergency managers, and as community members, can arm our children with the tools to succeed. We owe them that.

Sounds good – but how would I know, right? Fair question. A few years ago I tried to explain to my then 4-year old daughter that she and her brother might be woken up in the middle of the night to go into the basement if there was a tornado warning. Of course, it was already dark and stormy (thunder and lightning and everything). Needless to say, I did a very poor job, ultimately scaring her and beating myself up about my failed attempt to mitigate later fear through a botched explanation. Never again I vowed.

That was when I discovered that almost no one was having the conversation with young kids (toddler, preschool, or kindergarten) about disaster. At the same time, I realized that disaster was not going to sit by patiently and wait until my children could calmly and rationally discuss everything at a grown up level. I decided I could develop a way to talk with them in a way that didn’t scare them, but instead empowered them by teaching them what to do and giving them back a little control in a typically uncontrollable situation. They might not be able to stop the disaster, but they could do something to increase their safety within it.

I started Train 4 Safety Press to develop picture books that would teach children what to do “if.” As I conducted research, I discovered a few books out there on the science of disaster, but almost none that taught young children what to do when the disaster was happening. Our first book Elephant Wind tackles what to do during a tornado. Tummy Rumble Quake teaches children about the Great ShakeOut™ and earthquake safety.

Children have a great capacity for building their own resilience. Teaching them how to protect themselves can have an exponential effect. Children could not only help themselves, they could help their classmates, their teachers, their family and their community. Isn’t anything that increases the odds we bring our children home after a disaster worth it? Can we afford not to talk about it?”

And here is a great resource: National Child Traumatic Stress Network

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Medical Play: Modeling Empathy for your Child

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Colleague and friend, Teresa Schoell, is a child life specialist in upstate New York. She is featured in  “That’s Child Life!” , a video published by the Child  Life Council. She is also, first and foremost, a mother to Malcolm. She posted this story on FaceBook today, and with her permission (and Malcolm’s), I wanted to share it with all of you.

I just finished performing surgery on one of Malcolm’s beloved stuffies (a gift from the dear Justinn Walker). Apparently, JC the Lobster was quite anxious about the procedure, hiding in Malcolm’s arms while I threaded my needle.

“I’m scared it’s going to hurt,” came JC’s voice (with a marked similarity to Malcolm’s falsetto).

Then I heard Malcolm’s reassuring voice “Don’t worry, JC, we’ll give you sleep medicine so you don’t feel anything. Would a hug help you feel brave?”

A few hugs and and some invisible anesthesia later, the lobster was open on my table (prepped and draped in the usual sterile fashion….which is to say, laying on a couch cushion on my lap) Today’s procedure was to repair the distal fracture to the bendy wire in the patient’s left antenna, which supports movement and pose-ability.

Under general anesthesia I opened and peeled back the fabric, revealing the damaged wire. The sharp wire bits were realigned and repaired use med-surg duct tape, reinserted into the fabric, and sealed with a running subcuticular suture (sewed on the inside for a near-invisible scar). Procedure complete in 15 minutes with minimal stuffing loss. Patient resting comfortably.

 

I commend how Teresa invested in Malcolm’s powers of imagination and attachment by treating JC the Lobster with the respect one would give a live patient. When parents take their child’s attachments and emotional needs seriously, they model empathy, the glue that holds our society together.

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Child Abuse Prevention

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Thank you so much for joining me on my blogging adventure. It may take me some time to find my groove, and you may see me jumping around a bit to different topics. Please comment on which topics are of most interest to you, and I will do my best to give you what you need and enjoy.

Today, I am writing on one of the topics I had in mind when I set up this website – advice for child life specialists, but my hope is that it will be helpful for teachers and caregivers as well. A wise man, Jon Luongo, advised me that I have a great deal of writing material squirreled away in the posts I have been making to the Child Life Forum for a number of years. Today I responded to a request on the Forum for information and resources regarding running a workshop for parents/caregivers on child abuse prevention. Below is the gist of my response. Continue reading

Tilling

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A cluster of school children spill onto the bridle path from an entrance on the upper west side of Manhattan. They emanate pent-up energy and their voices crescendo as they discover the reservoir vista. I register some mild annoyance at their squealing, but it only takes me a moment to recalibrate and appreciate their excitement. They overtake me and I walk for a bit beside the noisy group, eavesdropping on their exuberance and their teacher’s failing attempts to curtail it.

“Stop walking that way. Walk like this. Pick up your feet!” Continue reading