Child Life On Call

When it comes to the Coronavirus, how we inform our children is incredibly important. If you’re wondering though, how can we talk to our kids when we as adults still don’t know exactly what’s happening, you’re not alone. This article covers suggestions for age-appropriate language to use as well as general considerations to keep in mind as you talk to your children. Children are looking to adults for honest, easy-to-digest information. Break it down into a way that they can understand. * Create an opportunity for open communication. There is a lot of information coming from news sources, TV, and the internet. Some of this information is factual, and some is not. Empower your children to ask questions when they hear information that feels unsettling and investigate together whether or not it is true.* Instead of focusing on what we don’t know, however, focus on what we do know:* This is a virus that is brand new and started in China.* The virus acts like a cold or flu virus.* This virus is spread through coming into contact with someone who is sick with the Coronavirus.* Hand washing is the number one way to stop the spread of this virus.* Talk to your kids like they are experts at handwashing – which they should be. Create a sense of empowerment and control over the spread of germs. “You already know how to stop the spread of germs through handwashing, covering your mouth when you sneeze or cough, and not drinking/eating after people. You already know how to stop the spread of germs!”* Speaking of handwashing – Ask your child to walk you through their hand washing process. Soap and water is best, for at least 20 seconds, with lots of bubbles between fingers (I like using this visual as a way to help them get a good lather).* As you sit down to talk with your children, It’s ok to admit that you don’t have all the answers. Some of the world’s smartest scientists and clinicians are still learning about this virus, and it would be remiss if we represented to our children that we had all the answers. * Set a good example – don’t panic. Like other aspects of parenting, model behavior that you want your child to follow. Wash your hands after sneezing, after using the bathroom, and before meals. Consider taking a break from TV/Radio if the source is using fear-tactics and inaccurate information that is causing more harm to you or your child.  While there is little doubt that the Coronavirus has spread fear and panic quickly across the world, you are in control of supporting your child through their questions and worries. Educate yourself, use common sense, and trust accurate sources like the CDC for information as opposed to articles that come across your social media feed.

This episode is not a cancer story. This is a story about a loving family, a precious child, and how to find miracles during the darkest parts of life. In this episode, Katie interviews Scott Kramer, father to Maddie. Maddie was diagnosed with atypical teratoid rhabdoid tumor (AT/RT) at just two and a half years old and sadly passed away after 8 months of treatment. However, Maddie's story is far from over.

In this episode Katie Taylor, Certified Child Life Specialist interviews Tara Geraghty, President and Founder of Making Cancer Fun. Tara is momma to Emily who was diagnosed with Stage 4 Neuroblastoma at just three years old. Tara used positivity and FUN to help herself and her daughter cope with their cancer journey. Tara is an author, webinar host, TedX Talk speaker, and just an all around inspiring person. 

This isn't your typical Child Life On Call episode! Katie sits down with two other child life specialists and each talks about their journey into child life, some "child life wins," and the hilarious things that kids have said to them over the years. About twenty minutes in, you'll hear Jamie second guess whether or not she should actually continue with the story she's begun... there are lots of laughs! This is a quick, fun episode that we hope bring you some smiles!

Tiger Livy is the story of a brave six-year-old who inspires all. It was created for children living with chronic illness but is a great read for any child, even if they're not sick. Co-Authors, Betsy Miller, who experienced her own limitations as a child and Erin Garcia, who grew up with a brother who required multiple hospitalizations, authored the book and in our conversation they give great insight into how friends and family members can support families facing challenges.

This is Lauren’s Story - A daughter with congenital heart defects on the Child Life On Call Podcast, hosted by Katie Taylor, Certified Child Life Specialist. Little Everly is just over two years and has more fight and life inside of her than most of us could ever dream of. And she’s not the only one… prepare to be amazed by big brother too. Their mom, Lauren, shares with us her optimistic perspective even when they've had had their share of complications and setbacks.

Meredith, mom to now 8-year-old Lola, shares her experience with her daughter who was diagnosed with Bosch-Boonstra-Schaaf optic atrophy syndrome (BBSOAS). From infantile spasms to possible lissencephaly (smoothing of the brain), they searched for answers and were eventually led to the NR2F1 gene mutation which explained many of Lola's symptoms. Meredith gets real in our conversation about the ups and downs associated with having a child with special needs.

At 16 years old and after being told she could never have children, Jade Marie was shocked to learn that she was 16 weeks pregnant. At at an emergency ultrasound less than 24 hours later, she learned that the baby inside of her had one of the most severe heart defects - she was missing the entire left side of heart.  In this epsidoe, we will hear Jade Marie describe what the journey with her daughter, Dawn Louise, has been like and what it is like to have a child with hypoplastic left heart syndrome.

Stephanie, mom to Adeline, shares her experiences in the NICU and describes Addie’s difficulty with digestion. A long road of unknowns eventually led to a diagnosis of functional short bowel syndrome.  Stephanie describes how having a child with an "invisible disease" can be a blessing and a curse, how she felt relief when they received Addie’s diagnosis, and how she handles tough to answer questions from well-meaning friends and families. 

This episode closes out Season 1 of the Child Life On Call Podcast. This podcast went from a dream to a reality thanks to the help of the all the courageous families who came forward to share their stories about having a child with medical needs. Season 1 covered the spectrum in illnesses, diseases and conditions, and all episodes had a similar theme: children are resilient and teach us more about the world and ourselves than we could ever imagine.    Katie gives life updates and talks about her need to bring to Season 1 to a close, but gives a preview of what is to come next season. In Season 2, you can expect to hear more brave parents come forward and share their inner most thoughts and feelings. We will talk about routine surgeries and the stress they can bring, as well as not-so-routine surgeries that can be life changing. We will hear from a parent whose daughter spent months of her life in the NICU after a scary delivery at 25 weeks, and we will hear from parents whose children have chronic health issues. Regardless of the diagnosis, each of these parents have an important message and story to share.   In this finale episode, you will also get brief updates about how Season 1 families are doing now.    A big thank you to all those who listen, share, and enjoy this podcast. We are always looking to record and share more stories, and if you are interested in doing so, you can contact Katie at info@childlifepodcast.com.   Another big thank you to all the photographers who took photos of these families… you have given them and the world a gift that can never be replaced!  Check out this episode!

At just six years old, Susan's son began complaining of belly pain along with other alarming symptoms. They were quickly sent to meet with a Pediatric Gastroenterologist and would eventually learn the news that her son had Crohn's Disease. Susan shares personal details about their journey, procedures, and treatments. Susan is honest, articulate and gives priceless advice to parents who may be going through similar situations.

Just after entering high school and an outstanding performance in a football game, Roxanne’s eldest child, Rueben, began having high fevers and flu-like symptoms. After about a week, his parents find him having a seizure and rush him to the emergency room. He is diagnosed with viral encephalitis. A year later, his seizures continue and he is diagnosed with epilepsy. Roxanne tells their story, spreads hope to other parents facing similar challenges, and raises awareness about encephalitis.

Her daughter started passing out at a young age which eventually led to diagnosing her with Tetralogy of Fallot, a rare cardiac defect. After a blood transfusion during surgery, her daughter acquired HIV. This mom and daughter talk about their experiences and the lessons learned along the way.

Mandy, a mom, talks honestly and candidly with us about what it’s like to live with a child who has a rare genetic condition. She discusses the current emotions that paralleled an experience she had in high school when she lost her mom to cancer. Mandy shares her concerns and fears associated with her son's future and having a a diagnosis she had never of before, and she also talks about some of his favorite things: trucks, books, and a Bob Marley song.

Mandy's son, Nolan, was born five weeks early with a host of symptoms which led them to find that he was diagnosed with a condition that only four other people are currently living with. Nolan is the ninth person in the history of medical science that has been diagnosed with Mandibuloacral Dysplasia Type B (Mad B).