The Mediocre Medical Mom

Just your average Mom navigating the world of parenting two children with medical needs.

RESOURCES FOR FAMILIES

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National Support & Advocacy Organizations:

Parents of children with medical needs and complex health conditions can access national organizations, family support networks, and state-specific programs for guidance and advocacy. No matter the diagnosis, the disability, the family dynamic, or the living situation, there is help out there for you as a parent, your child, and your family. Whether you are struggling to cope, struggling to understand, or just struggling in general, there is help created specifically for families of kids with medical needs of all shapes, sizes, and intensities. Below is a list of NATIONAL organizations, websites, and links that can help you no matter where you are in the country:

  • Family Voices offers national leadership, technical assistance, and connections to Family-to-Family Health Information Centers staffed by experienced families. Family Voices is a non-profit that works with organizations and initiatives building their capacity for engaging with youth & families. They support a network of family-led and family-serving organizations across the country in all 50 states, 5 U.S. Territories, and 3 Tribal Nations. Transforming systems of care to work better for all children & youth, especially those with special health needs or disabilities. Please visit: http://www.familyvoices.org to access thier full website including Quick Links to pages to get help such as- Center for Transition to Adult Health Care for Youth with Disabilities, Family Engagement & Leadership in System of Care (FELSC), Genetics Resources, Language Access in Health Care, and Youth as Self Advocates (YASA), along with access to other resources and programs.
  • Parent to Parent USA helps connect parents & caregivers with trained veteran parents who share similar experiences in raising children with special needs & disabilites. For links to things such as care, services, support, communicating online, and to learn more about caring for kids and teens with special health care needs; Please visit: http://www.mchlibrary.org to access their featured links such as: American Self-Help Group/Self-Help Group Sourcebook Online– information on national & international self-help support groups for chronic illness, disabilities, emotional/behavioral mental health challenges & family support. Catalyst Center Family Resources– contact information for state organizations & consumer assistance programs that help families understand health insurance options. Center for Parent Information & Resources (CPIR)– contact information for Parent Training & Info Center (PTI), Community Parent Resource Center (CPRC) in your state. Sibling Support Project– for siblings of kids with disabilities, online discussion group for parents & siblings. Exceptional Parent Magazine is an annual resource guide with directories of organizations, associations, products & services for families with children with disabilities. For your FREE COPY please call: (800) 372-7368. Other important links include: CaringBridge, Friends Health Connection, Center for Children with Special Needs, Disability.gov, KidsHealth, MedicalHomePortal, and My Child Without Limits (ages 0-5 for developmental milestones, early intervention, treatments, therapies, experts, and life planning.)
  • Center for Parent Information and Resources (CPIR) is a central network hub that helps families locate local parent training & information centers filled with valuable information & products specifically designed for the network of Parent Centers, helping serve families of children with disabilities. Please visit: http://www.parentcenterhub.org to find your Parent Center in your state and check out their Calander of Events. Some of the links that this website has to offer are: the Families New to CPIR: Get Started link, Early Childhood, Youth & Young Adults, Professionals, Native American Resources, Military Resources. It also includes a collection of curated tools to support families, caregivers, self-advocates, and educators by providing information about rights, services, best practices, leadership development, system navigation, and more.

Care Coordination & Medical Tools:

  • National Center for Medical Home Implementation Medical Home Portal on the MCHLibrary website provides guidance on achieving coordinated, family-centered medical care.
  • Patient Question Builder Agency for Healthcare Research and Quality offers practical tools to help families organize questions they may have and preparing for complex medical appointments. Please visit: http://www.aap.org to access the Medical Home Resources for Families and Caregivers link.

General Support & Advocacy

  • PACER Center (Parent Avocacy Coalition for Educational Rights) follows “parents helping parents”, providing tools for educational and medical advocacy. Please visit: http://www.ces-schools.net

Medical Guidance & Information

  • HealthyChildren.org is the official parenting site from the American Academy of Pediatrics (AAP), offering excellent expert guidance, developmental milestones, and symptom checkers

Hello,

Hi! I’m Jen, a mediocre Mom in a ‘children with medical needs’ world.

Welcome to The Mediocre Medical Moms corner of the universe! If you have landed here, it was for a reason. There is a specific group of people that we all happen to belong to; we are parents of children with medical needs.

Some are common, some are uncommon, some are rare, some are easy to understand, and some are not. We all face challenges in our daily lives trying to find the perfect balance for our children with medical needs as well as ourselves along the way…which isnt always easy for us. No matter the diagnosis, you are not alone and we are in this together. Whether you are just browsing to find some common ground with someone who can relate, looking for advice, tips, understanding, and even resources to help make this journey a little easier. I am happy that you are here and I hope youre able to find what you are looking for!

From my daughters Type 1 Diabetes diagnosis, to my sons 3 month stay at Boston Childrens Hospital for Tracheomalacia, Ventricular Septal Defect (and more), from medications to oxygen to feeding tubes, I have just about seen it all and I am excited to share my journey with you.

My hope is to give a little insight to anything a parent in our position might need. Whether I can help a parent that is new to this or just give some solace to a parents that’s been in it as long as I have, my goal is to share my story and help other parents with tools they need to keep pushing and continue to fight this fight TOGETHER.

In my page, you will find blogs of my personal experiences with diagnoses, hospital stays, adjusting to home life, relationships & kids with medical needs, adjusting to school aged children with medical needs, 504 Plans, IEPs, pregnancy, trauma, advocating for our kids, and more. I’m hoping to share all kinds of lists that can fit your needs/concerns, tips & tricks for coping, resources and much more!

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