Exceptional Care for Children – A place where children know “Its Kind of Fun to do the Impossible”

Navaya is a fun, exciting, unstoppable loving child whose life drastically changed the past 3 years since calling Exceptional Care for Children (ECC) home. Navaya arrived at ECC in 2014 as a very fragile baby with significant technology dependency and respiratory support. As a result, Navaya was not able to leave her bedroom to join her friends in school, therapy, or recreational play because of her medical fragility.

Even with these limitations, the staff at ECC did not allow Navaya’s grim prognosis to define her abilities; instead, they allowed Navaya to determine what her path would be. True to the ECC way, Navaya has revealed her superhero spirit and has learned to overcome her medical obstacles.

She is now making progress beyond her wildest dreams and travels our hallways to go to school, skilled therapy, and recreational play therapy every day! Her progress is due to her fiery perseverance and the unwavering, collaborative work of ECC’s nursing and therapy department.

The nursing and therapy team at ECC is unlike any other. They are literally keeping children alive and giving them a life by creating individual therapeutic and medical goals moving each child to the next level. While doing so, they are strategic and thoughtful in their approach to not just check off a box and move to the next step but creating the best life possible for each child.

Navaya is a great example of their individualized approach. Navaya struggled to learn how to walk on her own. Knowing her struggles, therapy and nursing developed ways to get her moving in a safe way despite the additional equipment attached to Navaya, – which by the way – is not meant for movement. It is meant to be in a sedentary position. This equipment can easily move and shift but let’s remind ourselves – we are caring for children – AND we want to give them a childhood without any limitations.

So, how does this dream team of therapist and nurses make the impossible, possible? It is due to their immeasurable level of mutual respect and trust that allows goals to be met and at times exceeded. This mutual respect is evidenced when therapy checks in with nursing on the health of each child before working with them. Understanding that there will be days when a child may not be feeling well or they may not be strong enough to endure a certain level of therapy at any given time.

This level of mutual respect has created an environment that each CHILD is able to trust and believe in the nursing and therapy team that they will give them the exceptional level of CARE they need to LIVE the exceptional LIFE they deserve.

By: Heather Spencer and Erik Raser-Schramm

Meet Heather: My name is Heather Spencer, I am 36 years old and currently reside in Palmyra, Pennsylvania with my daughters Aebi (11), Olivia (8) and my husband Ben.  I am a Human Resource Manager for a local airport.  I grew up in Middletown, Pennsylvania with my parents and four older brothers.  I have wanted to be a gestational carrier since the birth of my first daughter.  It was placed on the back burner and finally rekindled in 2013. I was matched with Erik and Jonathan in the summer of 2013.  After two failed transfers and one chemical, we were finally successful on our fourth transfer.  Little Isaac (or baby bean) was born in May, 2015.  We started pursuing a sibling journey when Isaac was about a year old.  We had a failed transfer and another chemical, but finally on our third attempt we were successful.  Little Sprout, as we’ve coined this pregnancy, is due in November, 2017.
Meet Erik: My name is Erik Raser-Schramm, I’m 40 years old and currently reside in Townsend, DE on a small 10 acre organic farm with my husband Jonathan and our two year old son Isaac. I am currently the Chairman of the Delaware Democratic Party and serve on the boards of Kind to Kids, Kids Count and the Delaware Association for the Education of Young Children and Jonathan is a neurologist at Christiana Care. When we were married five years ago, we had the dream of becoming a family, a dream that became a reality when we were matched with Heather.  While today we are so excited that our new baby boy will arrive on November 14th, our journey with Heather actually started in the summer of 2013. We look forward to sharing our roller coaster journey with the hope of giving people a glimpse into surrogacy and everything that it entails.
In this picture: Heathers family; Erik, Jonathan and Isaac; the day Isaac was born; the Spencers and the Raser-Schramms together
pic for blog

Exceptional Care for Children

I began volunteering at ECC almost a year ago and since that time, I have spent over 125 hours with some of my new friends. Whenever I spent time with any of them, it’s the highlight of my day.  By the expression on some of my new friends’ faces or the words some of them can share, I believe I am a welcomed distraction in their life.   It didn’t take long to realize that when I’m at ECC I’m surrounded by Superhero’s.   

At ECC, I assist in play therapy, free play with the children, or sometimes I just hold and rock a baby.  In all cases, I’m given the opportunity to share my love with them, see them grow stronger, and even transition back to living with their families.  Each time I’m there, I witness courage first hand.  Each of these tiny souls musters more courage on a daily basis than many of us will have to find in a lifetime.  As I watch Navaya who couldn’t move long ago now adeptly scooting around in unique ways, I’m reminded of Spiderman who defies physics and leaps about.  As I reflect on Navaya’s progress over the last few months, I’m reminded of the Hulk who possesses super-strength.  Or when I think of Danny who beat all odds of survival in his first few months of life, I think he’s like a little Captain America who beat all odds and survived being frozen in ice.

From the cleaning staff to the nurses to the engineers and to the doctors who are specialists in their fields, all of these individuals appear to me to be part of a team like the Avengers working closely with the ECC residents to fight the physical and development challenges each face.  So many remind me of Iron Man who has a genius level intellect that allows him to invent a wide range of sophisticated devices to solve problems or Superman with his strong moral compass and desire to help all of humanity.   Every individual shares a common purpose to support these children and provide them with a normal life – the kind of life you and I take for granted.  Everyone who works there is selfless.  The focus is the child, and the environment is so encouraging.  I’m convinced that the positive “spirit” of ECC, the group that simply will not accept failure in any way, plays a large role in the healing and success the children have.

I’m not sure if I’m paying back, paying forward, giving or receiving, but I know that all of these children have touched my life and are somehow influencing my future and what I’m meant to do. I know that everyone is capable of doing something to make the lives of others better.   I wanted to share my story of ECC with hopes that you realize “A Superhero lies within each of one of us…all you have to do is put on your cape.”

Teachers Say Social-Emotional Learning Can Lead to Healthier, Happier Kids

As teachers, we know our jobs involve a lot more than academics.

There are students in each of our classrooms who are suffering through stress and trauma at home, be it from poverty, hunger, divorce, addiction, violence, a learning disability, or otherwise, which can batter a child’s sense of self-worth, or hamper their ability to focus and learn. Some of our students can’t seem to make friends with their classmates, or persevere through a difficult challenge.

Just as we know that every student has a unique academic learning style, we know that every student has unique social and emotional needs. We see firsthand what the research attests—that social and emotional development is critical to students’ academic and occupational success. The social and emotional “soft skills” like communication, collaboration, and empathy must be embedded into the class curriculum alongside academics.

We’re not the only ones who think so.

Earlier this year, the Rodel Teacher Council surveyed more than 220 educators from pre-k through 12th grade and from every school district in Delaware, including vo-tech and charter schools.

Nine out of ten Delaware educators agreed that social and emotional learning (SEL) is critical to student success and should be emphasized more in school. Around 97 percent of educators said they want more training on best practices in SEL, with 51 percent indicating they were “very interested.”

While educators could identify more than 40 SEL programs or initiatives happening in their schools, we know that they report lack of supports such as resources, training, measures and standards, which leaves our schools without strong coordination or an understanding of what’s working.

                                                                        

We’ve put these findings and more into our new brief: Educators Speak Up: Social and Emotional Learning in Delaware with the hope that they’ll contribute to the growing focus underway and help educators to work alongside families, policymakers, community members, and all education partners to address the social and emotional needs of every student in our state.

It will take all of us to build a positive climate for SEL in our schools and communities. But our work will lead to classrooms filled with confident, equipped teachers—and healthier, happier kids. Ask your child’s teachers and school or district administrators how they support whole child development in your school, and find out how you can get involved.

We hope you’ll join us by learning more at bit.ly/RodelSEL.

Providing Exceptional Care for Children

All parents want to provide the best childhood possible for their children. For some, this looks like giving their child the best education; making sure that they never want for food, clothing, shelter; and families coming together to celebrate life’s milestones. For other parents, it is the same, just with medical equipment and — potentially — a completely different place for their children to call home. This describes a typical lifestyle for children who call Exceptional Care for Children (ECC) home.

ECC is the first and only pediatric nursing home facility for medically fragile and technology dependent children in Delaware. A place where your child was initially cared for at area children hospitals and you relied on them to keep your child alive; they rely on ECC to keep your child thriving for their next steps in life. The medically fragile population we care for could spend weeks, months, even years here until they are able to transition home to live healthy, happy lives with their families. Some might even transition to an adult nursing home to continue their life-saving care. While their childhood is not typical, we strive to provide the best one possible despite their circumstances.

Providing the best childhood is not possible at ECC without the high-level of care provided by our staff. ECC staff members are not just defined by our respective job titles. We double as a helping hand to the mom who visits her baby and needs guidance, to being her source of comfort. We are friends to children who just want to have someone to have a dance party with or play a video game, and at times, we double as families for residents on holiday and birthday celebrations. As a unit, we happily provide these quintessential childhood experiences with lots of love, care, and support in tandem with residents families.

While every day is different at ECC, they are always filled with laughter, requests for the iPad, Dora the Explorer, and requests to go outside and play on the playground. They also just happen to include ventilators, walkers, and other adaptable equipment so that our kids know there are not any limits keeping them from living their best life possible.

To learn more about Exceptional Care for Children and the services we offer, please visit our website at www.exceptionalcare.org and view our 2017 video at https://vimeo.com/207042143.

Helping Your Kids with Shots and Procedures

Summer is approaching, and if you’re like many parents, that means upcoming physicals and possibly vaccines or blood draws for your kiddos are around the corner. This topic always seems to make parents cringe. Of course, we know the importance of vaccinations, but it doesn’t necessarily make it easier to watch your kid squirm, scream, and cry when the nurse comes in with the tray carrying the dreaded needles.

 

Thankfully, research doesn’t stop at demanding kids get vaccines; Drs. Christine Chambers and Anna Taddio are well-known Canadian pediatric psychologist who study pain and have worked to get the public message out that pain management in kids is important and relatively accessible, especially in the case of vaccines! The campaign, “It Doesn’t Have to Hurt” is an excellent resource for parents and can help you with your own children’s vaccines! Do you know currently, fewer than 5% of kids receive any pain management during vaccines? Parents can help change that number!

 

What Should You Do to Help Your Child?

 

For Babies:

  • It’s never too early- from your child’s first prick or poke, pain management helps set the stage for less fear later on. (Did you know that boys who have circumcisions without pain management have more pain at subsequent vaccines?)
  • Breastfeeding before, during, and after vaccines serves as a natural pain aid.
  • Sweet tasting solutions (sugar water) during vaccines help infants who aren’t breastfeeding or aren’t with breastfeeding mom at time of the shot
  • Holding baby upright, close to parent.
  • Be the advocate for your child- tell your doctor or nurse about this research and why you’re nursing during the vaccines!

For Kids:

  • Be honest with your kids; don’t use vaccines as a threat or punishment
  • If your kids are old enough, tell them that vaccines are medicine to keep them healthy!
  • Don’t say “it won’t hurt” or “don’t worry!”
  • Let kids sit upright, a supine or laying position may make it worse.
  • Ask about topical anesthetics or pain blocker such as Buzzy the Bee!
  • Rub the area of skin before vaccine is given.
  • Slow deep breathing helps reduce pain; try using a pinwheel or bubbles for younger kids to help guide the breathing!
  • Distraction works! Use an ipad, TV show, game, phone, to help kids put their minds on something other than the procedure.

Shots can be a pain, but they don’t have to be! Try some of these tips at your child’s next physical or vaccine appointment!

 

Interested in more information?

It Doesn’t Have to Hurt You Tube Video

It Doesn’t Have to Hurt Campaign

Meghan Tuohy Walls, Nemours Psychologist

Starting the Conversation

If you or someone you know has been diagnosed with cancer, one of your first thoughts may be: How do I tell the children?

Adults often fear telling children that cancer has come into the family. We all want to keep the children we love happy and it’s hard to think of talking to them about something that will make them—and us—upset.

The thing is, children are very sensitive to what is happening around them. They can sense when something is wrong and the adults they love aren’t talking to them about it. Children also have very active imaginations. Not telling a child what the family is facing leaves them to imagine situations that are often worse than things really are. Young children may also believe that something they have done has caused the problem. Not being able to talk about their concerns can leave them feeling isolated, alone, sad or worried. Although telling your children about a cancer diagnosis is hard, it is important and necessary.

Here are some helpful tips for talking to kids and teens about cancer:

  • Be honest in answering their questions
  • Use simple language that your child can understand
  • Don’t be afraid to use the word cancer
  • Let children know it is ok to feel sad, mad, scared or confused
  • Let them know about expected changes in their routines
  • Let them know about any expected change in your appearance or behavior (hair loss, fatigue)
  • Don’t force information. Answer questions as they come up
  • It is OK to share your feelings with your children
  • It is OK to let your children see you cry
  • Give your children small age appropriate jobs so that they feel involved.

 

Resources & Support for Kids & Teens

 

Cancer can affect a family in many ways. There are changes in day-to-day routines and more responsibilities to be managed. Feelings of anger, sadness, helplessness, regret and fear may touch different family members at different times, making life unpredictable for everyone. Every family member’s experience is unique and different, often making it hard to know how to provide support to one another.

 

Cancer Support Community Delaware is a statewide nonprofit organization dedicated to providing support groups and programs to cancer patients, caregivers and family members, including children, teens and young adults. All programs are led by licensed health professionals, at no cost to the participant. Programs offered range from Yoga, Chair Yoga, T’ai Chi, Zumba and Meditation to Journaling, Poetry, Art Therapy, and specialty programs such as Bereavement and Mindfulness Based Stress Reduction. Services are offered statewide in Delaware, with the New Castle County office located in a serene homelike setting on four beautiful acres of gardens.

 

4810 Lancaster Pike

Wilmington, DE 19807

(302) 995-2850

www.cancersupportdelaware.org

 

Supporting Kidds provides a compassionate pathway to healing for grieving children and their families, and to empower the community to support them in the grieving process.

1123 Old Lancaster Pike

Hockessin, DE 19707

(302) 235-5544

www.supportingkidds.org

 

For more information about Cancer Support Community Delaware, visit www.cancersupportdelaware.org.

 

Nicole Topkis Pickles is Executive Director of Cancer Support Community Delaware (CSCDE), a statewide nonprofit organization that provides psycho-social support services, including support groups, mind/body programs and educational workshops all at no cost, to people with cancer and their loved ones in all three counties throughout the state of Delaware. Nicole is a cancer survivor and was a member of the Board of Directors of CSCDE before taking the reigns as Executive Director in May 2014.

“Hey, you’re the blow dry girl!”

“Hey, you’re the blow dry girl!” I recently heard someone shout across the room. I was at an estate sale with my 10 year old son, who kindly reminded me “Mom, I think she means you.”.

Up until a few weeks ago, I didn’t think of myself as the owner of a small business. That’s because for the past 14 years I had a successful career in banking. Successful, if you measure by title, or size of my team, or annual budget, or visibility to senior management. But it didn’t always feel like success. In my world, success meant long hours on conference calls. Success meant global roles, which meant global hours, which meant 9pm calls with Asia. Success meant good vacation time, but spending half that time struggling to get on the hotel’s wi-fi and responding to “we’re so sorry to interrupt, but it’s urgent” texts and calls. And for me this success meant paying someone else to take my kids to the park and the pool and put them to bed. It meant meals eaten from vending machines, and unused gym memberships. Success meant taking sleeping pills every.single.night  to calm a brain that was always racing with to-dos – doctor’s appointments, sports signups, work presentations, reviews to write, calls to return, gifts to buy, date nights to arrange. So while my resume said ‘success’, my day to day life screamed just the opposite.

With no end in sight, the question I was constantly asking myself was: Is this IT? Is this the life I intended to lead for the next 5, 10, 20 years? Is this why I studied hard and went to college and grad school – so that I could wake up to a hundred pre-dawn emails, go to bed bone tired every night, and wake up just to do it all over again?

Then about a year ago my colleague Linda shared a New York Times article about ‘the permission gap’. In a nutshell, it argued that if you’re looking for permission to make a major change in your life then, well, best of luck, sister. You will never get it. The world rewards us for maintaining the status quo.  The article struck me in a way other “follow your dream!” articles didn’t. Was I just waiting for someone to tell me it was ok to quit? And if they did, and I did, what would be next?

Then a few weeks later, on one of my frequent trips to New York City I was having a particularly bad day and got a blow-out between work and an after-hours function. The bar was hopping – champagne flowing, good music, and every customer leaving with a smile on their face and a spring in their step. Having just spent 10 hours in a dry office with security badges and white noise and small cubicles and petty politics, I couldn’t help but wonder – why couldn’t my work be like that? And it’s not hard to piece together what came next – 6 months later I opened my first blow-dry bar.

So how has life changed? While in some ways I’m ‘always on’ as a business owner, my decision is affirmed every day as I pick up the kids from school, check my email (down to about 10 a day, all after 9am), work out, crank up the music in the bar, or see a smiling customer walk out the door. And while this path is obviously not right for everyone, the idea of closing the permission gap – the gap between what you want to do and actually doing it – should resonate with anyone. Permission granted.

Social Emotional Learning

Academics are critical, but so is your child’s social and emotional development

By Paul Herdman, president and CEO of the Rodel Foundation of Delaware

Back in the 1980s, when I was a teacher in one of New York City’s largest high schools, George Washington High School, I got a sense of what my students needed to grow up to be healthy adults, and it extended beyond traditional academics. They were freshman in high school, 14-year-old kids, who in many cases grew up alongside poverty, hunger, violence, and addiction. I wrote about my experiences in more depth here, but I realized early on, that for me to connect with them on their academics, they needed to be seen, to be understood as individuals, and to be challenged.

My job as their instructor was to help forge the connection between school and real life—and support them to discover that, if you push yourself and persevere through challenging experiences, you can tap into an inner-reserve of resilience and toughness that you can always rely on. I was in a unique position to marry their traditional in-school experiences with adventures outside our classroom walls.

During one curriculum unit that I called “The Wall,” we read Langston Hughes’ famous poem “As I Grew Older”—which speaks of the metaphorical walls of racism. I had my students discuss the walls and challenges they dealt with in their own lives. Then I took them to an actual 35-foot rock wall near the Hudson River, where they learned how to tackle a seemingly impossible task by breaking into a series of smaller steps, by communicating with and relying on each other, and by persisting through tough situations. Once we got back into the classroom, we revisited those personal walls, and now they had a new set of tools to address them.

Strong academics will always be central in our schools. But in a rapidly changing world, it’s becoming increasingly important that our young people receive a holistic educational experience that maximizes who they are as individuals—one that instills skills like communication, collaboration, critical thinking, empathy, and creativity. We also know that physical and mental health, nutrition, and exposure to the arts are also huge factors in the development of our young people. This is true of all children, and particularly those who come from challenging backgrounds.

This concept of developing the “whole child”—a phrase that’s often cross-referenced with “social-emotional learning”—is not a new one. Generations of educators have told us that the so-called soft skills mentioned above are all important ingredients in child development. Employers are also telling us the same thing. In Delaware, we’re excited to see a renewed focus and collaboration on social-emotional learning.

We at the Rodel Foundation are firm believers in excellence and equity for each of Delaware’s students—and we believe that nurturing students holistically is the basis for not only helping them become successful in school, but become good citizens and happy and healthy adults. However, these skills are not easy to measure or teach, so that is a challenge we hope to pursue in the coming months and years. I invite you to help us push our thinking and to learn along with us.

We are working with a group of Rodel Teacher Council members to study social-emotional learning in Delaware. This dedicated group of educators believe schools should focus more on social and emotional development of students—and they are working to elevate their sense of what’s needed. But it’s clear that educators cannot do it alone.

Parents, ask your child’s teachers how they support whole child development in your school, and find out how you can get involved. Check out the social and emotional development tips at www.parenttoolkit.com for every grade level.

If we want our children to thrive, we need to take a holistic approach to supporting them. This will take all of us — educators, families, and the community – rolling up our sleeves and building a bolder and broader definition of student success. I look forward to working alongside you.

Read more about social and emotional learning in Delaware at www.rodelfoundationde.org.

Podcast Pediatricians by Dr. Robert Walter and Dr. Matthew Gotthold

https://play.google.com/music/listen#/ps/Iwcx225u4xsqmbiwi4mmng5g5su

Follow them on Facebook – https://www.facebook.com/podcastpediatricians/