Your Go-To Guide for Additional Support: Recommended Reading and Online Resources for Caregivers

Navigating the world of caregiving for a child with chronic or special health needs can be both challenging and rewarding. To support you in this journey, we’ve compiled a list of valuable resources, including inspiring books and helpful online networks, tailored for parents and caregivers. These tools can offer comfort, practical advice, and a sense of community.

Recommended Reading for Parents and Caregivers

“A Different Dream for My Child: Meditations for Parents of Critically or Chronically Ill Children” by Jolene Philo
This touching book provides comfort and inspiration to parents facing the trials of raising a child with serious health conditions. Through meditative reflections, Philo emphasizes hope, resilience, and finding strength amidst the challenges.

“Sometimes” and “Just Because” by Rebecca Elliott
These charming children’s books offer a gentle perspective on growing up with a sibling who has special needs. They are ideal for helping young readers understand and relate to their unique family dynamics.

Recommended Websites and Social Networks for Parents and Caregivers

• A Very Special Family
  • The McNulty family’s website and Facebook page share their personal story and offer support to others in similar situations.
• American Lung Association
  • This organization provides resources to improve lung health and prevent disease through research, education, and advocacy.
• Cerebral Palsy Parents Information Group
  • A Facebook group for families affected by cerebral palsy, offering support and shared experiences.
• Department of Education’s Early Intervention Program CONNECT Helpline
  • Provides support and services for children from birth to age 5 with developmental delays and disabilities. Call 800-692-7288.
• Epilepsy Foundation
  • Offers services and programs for those affected by epilepsy, including respite care. For Western/Central PA, visit epilepsy.com.
• Family Voices
  • A national organization led by families of children with special health care needs and disabilities, offering support and advocacy.
• Hope Grows
  • Provides counseling, support, and short breaks to help caregivers maintain wellness.
• Muscular Dystrophy Association
  • Offers resources and support to families affected by muscular dystrophy.
• PA Able
  • A savings program for individuals with disabilities that preserves government benefits while allowing tax-free savings for disability-related expenses.
• PA Autism
  • The leading source of autism-related resources and information in Pennsylvania.
• Parent to Parent of Pennsylvania
  • Connects families of individuals with disabilities or special needs, providing peer support and resources.
• Pediatric Palliative Care Coalition
  • A volunteer group offering information and resources for families with children with life-limiting conditions.
• Pennsylvania Health Law Project
  • Provides free legal advice and assistance for families needing pediatric shift nursing services. Call 1-800-274-3258.
• Pennsylvania Homecare Association
  • Advocacy group for home health providers, patients, and families, with a provider directory available online.
• Pennsylvania Medical Home Initiative
  • Supports children with medical complexities through a network of primary care practices funded by the Department of Health.
• The Arc of Pennsylvania
  • Advocates for people with intellectual and developmental disabilities, promoting their inclusion and rights.
• Technology Assisted Children’s Home Program (Children’s Hospital of Pittsburgh)
  • Supports families caring for children with technology-assisted needs at home.
• Technology Dependence Center (Children’s Hospital of Philadelphia)
  • Assists children with chronic lung disease who use assistive therapies like oxygen.
• United Cerebral Palsy
  • Provides services and supports to individuals with disabilities, including online guides for parents and youth.
• Variety: The Children’s Charity
  • Offers unique programs, experiences, and equipment to children with disabilities in Pennsylvania and West Virginia.

By exploring these resources, you can find the support, information, and community you need to enhance your caregiving journey. Remember, taking advantage of these tools is a crucial step in ensuring both you and your child receive the care and support you deserve.