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Who’s Who on Your Child’s Care Team?
Keeping track of each person you meet during a hospital stay can be overwhelming. Certified Child Life Specialist (CCLS), Alyssa Friedberg shares a list of common medical and other professionals who may be on your child's care team, along with tips and resources to help your child become familiar and comfortable with the people they meet during their hospital stay.
Food Labels and Your Child’s Health
Since 1994, the U.S. Food and Drug Administration (FDA) has required that all packaged foods sold in the United States include a Nutrition Facts label. The label includes a lot of information, but that information is only helpful if you understand what it means and how it applies to your personal nutrition needs, and the need of your child.
Tiny Humans, Big Emotions: Building an Emotional Toolkit
Everyone experiences big emotions, including children. As caregivers, we can assist children in identifying their emotions, understanding them, and building healthy coping skills. The resources in this guide can be a great start to help a child build an emotional toolkit for dealing with even the most challenging circumstances.
Pediatric Hospice: Empowering Children & Families
Deciding when and how to engage with pediatric hospice services can be overwhelming. This guide, written by a Certified Child Life Specialist (CCLS) and grief counselor, includes resources that you may find helpful if your child’s medical team has mentioned hospice as a possible next step in your child’s care.
Healthy Handwashing: Tips from a Nurse
Handwashing is so essential to preventing the spread of infection that it is one of the first skills taught and tested in nursing school. If your child is hospitalized, then you are a vital member of their healthcare team. One important role you can play is keeping the germs at bay through frequent and proper handwashing, using the tips and techniques in this guide.
Parenting a Child with Special Needs: Diagnosis & Infancy
Caring for an infant is challenging enough without the added obstacles brought on by a diagnosis like spina bifida. Hillary Heaton shares her tips as a mom providing daily care to a child with special needs during her first year of life.
Candy, Sweets and Halloween Treats: Common Side Effects of Pediatric Cancer
Cancer treatment often comes with many unfortunate side effects. On special days like Halloween, where candy and treats take center stage, food-related side effects can make a child who is battling cancer feel left out at an already challenging time. With a little forethought, and some simple modifications and tricks you can help make sure that Halloween is a treat for all!
Attending School with Cancer
For school-aged children, cancer treatment can mean time away from the classroom and missing out on vital educational and social experiences. Thankfully, there are many organizations and tools available to help your child stay connected and engaged in academics during their cancer fight.
Parenting in the PICU (Pediatric Intensive Care Unit)
Kelli Argento never thought she would be a “PICU Parent,” but when her son Ryder was unexpectedly born with a congenital heart defect, that’s exactly what she became. During his young life Ryder has had multiple heart surgeries that have required him to spend more than 100 days recovering in a Pediatric Intensive Care Unit (PICU). Kelli shares her wisdom, tips, and resources for parents who may be facing a long hospital stay with a critically ill child.
Representation Matters: Inclusive Play Resources for Children with Special Needs
“Positive representation matters. To see yourself reflected by huge toy brands like Playmobil and Lego is about more than just a toy. It’s about these brands sending out a powerful message that everyone should be included and celebrated, not just able-bodied people. If we leave disability out of the toy box what does that teach kids in real life? That it’s OK to exclude?” - ToyLikeMe
This resource feature highlights the importance of disability representation during play, and offers suggestions to help make your child’s toy box more inclusive.
Traveling with Children who have Special Needs and Medical Challenges
Children with disabilities and medical challenges often require carefully coordinated, specialized care. This can make traveling away from home complicated, but not impossible with proper planning and resources. In this guide you’ll find resources that may help make traveling less challenging if your child has special needs or a medical condition to consider. This guide and the resources listed are not meant to replace consultation with medical professionals, or to diagnose a medical condition. Please reach out to a professional for advice and assistance.
Finding Support and Information When Your Child Receives a Rare Disease Diagnosis
When your child receives a new medical diagnosis it can be helpful to seek support from other parents and caregivers who have been in your shoes. But if your child is diagnosed with a rare disease or condition it can be difficult to find information or a community of other families who share your experience. In this guide you’ll find resources that may help you as you begin to navigate life as the caregiver for a child with a rare medical condition.
Pediatric Palliative Care: What is it and Who Needs it?
Having a child with a serious illness is difficult for the entire family. Treatments that may be necessary to save or extend a child’s life can sometimes take as much of a toll on them as the illness itself. If your child has a serious illness, palliative care may be available and beneficial while they are being treated for their medical condition. Often confused or equated with hospice care (which is provided when a person is considered to be at the end of their life), palliative care can be added to a treatment plan at any time following the diagnosis of a serious illness. This guide explores the differences between palliative and hospice care, and share resources that may help you determine whether or not a palliative care program could benefit your child’s health and well-being.
Holiday Health: Staying Active and Eating Well
Being a parent during the holidays may not feel like much of a vacation. Balancing family events and daily activities while your children are off their usual schedules can be challenging, and encouraging healthy choices with holiday treat temptations all around can be difficult. While it is important to relax and take time to enjoy the season, some simple planning and lifestyle adjustments can help everyone, kids and adults alike, stay active and healthy during the holidays. In this guide you’ll find resources that can help you and your family to make healthy choices.
Bullying Prevention Through Inclusion
One out of every five school-aged children reports being the target of a bully during their youth. While anyone can be a victim of bullying, children with disabilities are more than twice as likely to be bullied than their typically-developing peers. Bullying can present in varying ways including physical bullying, verbal bullying, and cyberbullying, and all forms can have a devastating impact on the victim. Breaking the bullying cycle begins with creating an inclusive environment where all children understand what it means to be different from your peers. The resources in this guide can help you start or further the conversation with the children in your life about inclusion and acceptance.
Halloween Guide for Parents of Children with Disabilities
Halloween is a fun and exciting holiday for children and their families. With costumes, candy, and spooky delights, it is no wonder October 31 is so popular with kids, and kids at heart. Parenting a child with a disability or medical challenge can make full participation in Halloween and other bits of fall fun more complicated, as the idea of going apple picking or trick-or-treating might be more scary, rather than fun. In this guide you will find resources to make planning for Halloween a little bit easier.
Seizure Safety Resources
If your child has a condition that makes them more likely to experience seizures, it is important to be prepared in the event that a seizure occurs. Witnessing a seizure, especially in a child, can be a frightening event. Your reaction and response can help keep the child safe and comfortable until the seizure has ended, or is controlled by medical intervention. In this guide you will find resources designed to help keep a child in your care safe during a seizure.
Caring for Children with Severe Food Allergies
Managing the needs of a child with a food allergy can be a complicated task. Since some allergic reactions can be severe and even life-threatening, it’s important to be prepared and proactive as a caregiver for a child with a food allergy. In this guide you’ll find resources related to the identification, prevention, and treatment of allergic reactions to food. The resources in this guide are not a replacement for medical consultation or care. Please consult your child’s pediatrician if you have concerns about food allergies and how to treat an allergic reaction.
Finding Your Support Community
A new medical diagnosis often comes with more questions than answers, as well as a flood of emotions. As a caregiver to a child who has special needs or a complex medical condition, it can be helpful to find a community of supportive people who understand the challenges you have faced or will face while caring for your child. With the rise of social media and other web-based resources, information has never been easier to find and making contact with others is a breeze. But how can you be sure that you can trust the information or people with whom you are connecting? In this guide we will share some tips on how to find information and a community of support when your child is diagnosed with a disabling medical condition.
Building Healthy Eating Habits at Home
Eating a healthy diet that includes vitamin rich fruits and vegetables can reduce the risk of serious chronic illnesses and support the development of a healthy immune system. Breaking bad habits can be difficult and building healthy ones takes time and dedication. Helping your child build a healthy relationship with food at an early age can set them up for a lifetime of good health. In this guide you will find resources that can help build your child’s healthy eating habits as they grow.