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GROW Community Helpful Links and Resources

Aimee Sharp
Author | Shield HealthCare
06/03/15  10:40 AM PST
Helpful links and resources

Resources for Children and Families

Families of children with special needs require extra support and resources to help them get through the day-to-day, let alone navigate the waters of chronic conditions, school and learning and other aspects of life. We hope these helpful links and resources are helpful for you and your child.

Conditions That Affect Children

Autism

  • Autism Society 
    • Increasing public awareness and providing the latest information regarding treatment, education, research and advocacy
  • Autism Movement Therapy 
    • Workshops by trained therapists on dance, music, theatre and visual arts to support and assist with sensory integration and behavioral challenges as well as provide a natural setting for social interaction with typical peers.
  • AutismNOW
    • Resources and information on community-based solutions for individuals with autism, other developmental disabilities, and their families
  • Autism Speaks
    • Science and advocacy organization dedicated to funding research, increasing awareness and advocating for the needs of individuals with autism and their families.
    • Online learning tools, software and apps to help people with autism work on skills and abilities
    • Comprehensive resource guide by state and local support groups listing
  • Caring 4 Our Kids
    • We have come together to curate and create resources that have been helpful to us in the hopes that these will help other parents struggling to care for and to help their children thrive
  • My Aspergers Child
    • Education and Counseling for Individuals Affected by Autism Spectrum Disorders
  • myAutismTeam
    • Social network for parents of children with autism to gain emotional support, practical advice and insights on managing autism
  • National Autism Center
    • It is a nonprofit organization dedicated to disseminating evidence-based information about the treatment of autism spectrum disorder (ASD), promoting best practices, and offering comprehensive and reliable resources for families, practitioners, and communities
  • Operation Autism
    • Operation Autism is a web-based resource specifically designed and created to support military families that have children with autism
    • Identify sources of treatment and support on and off base
  • Organization for Autism Research
    • OAR set out to use applied science to answer questions that parents, families, individuals with autism, teachers and caregivers confront daily
  • Sesame Street and Autism
    • Developed with input from parents, people who serve the autism community, and people with autism, See Amazing in All Children offers families ways to overcome common challenges and simplify everyday activities
  • The Sensory Spectrum
    • News, blog articles, resources and tips for parents of children with Sensory Processing Disorder (SPD), which often accompanies Aspergers and Autism
  • Tuck – Autism Spectrum Disorder (ASD) and Sleep
    • Tuck provides unbiased and comprehensive information on sleep science with a complete guide to ASD related sleep disturbances. Including the latest diagnostic information, treatment options, bedtime tips and additional resources for individuals and families.

Cerebral Palsy

  • Cerebral Palsy Research Registry
    • Multi-institutional secure database that can be used to connect interested families with researchers studying cerebral palsy to promote understanding of the condition
  • CP Daily Living
    • Journal and resources for parents and caregivers of children with CP
  • CP Family Network
    • Legal and medical resources to empower cerebral palsy families

 

Developmental Delay

  • My Child Without Limits
    • Resources for families of young children ages 0-5 with developmental delays or disabilities, including early intervention services, assistive technologies, therapies, community organizations and government services

 

Down Syndrome

  • Downs Designs Dreams
    • Advocates disability awareness, promotes independence and instills confidence by designing, developing and marketing a special clothing line for special people to meet the needs of individuals with disabilities and their families

 

Hydrocephalus

  • Hydro Angels Over America
    • Provides emergency financial funds, educational material, hydrocephalus awareness products featuring the globally recognized Hydrocephalus Awareness Ribbon, hosts “Camp Hydrocephalus,” and more

Metabolic Conditions

 

Muscular Dystrophy

 

Spina Bifida

 

 Spinal Cord Injury/Quadriplegia, Paraplegia 

  • Christopher and Dana Reeve Foundation
    • Resources for children and teens living with paralysis, including information on health care coverage, education programs and frequently asked questions.

Children with Disabilities Resources

  • ACEing Autism
    • Connecting children with autism through unique tennis programs using advanced proven methods that positively impact children, families and communities nationwide
  • American Association of Adapted Sports Programs
    • Dedicated to developing adapted interscholastic sport programs in partnership with national, state, and local educational agencies, affording students with physical disabilities access to competitive sports
  • The Children’s Place
    • Provides resources to families in  Chicago and around the world, helping them overcome the physical, emotional, social and financial effects of HIV/AIDS and other life-changing health conditions, such as Cerebral Palsy, Autism and Spina Bifida. Chicago programs include centers for residential living, early learning, foster care and adoption and family and community services.
  • Great Kids
    • Content and tools to help your child learn and grow with resources on learning disabilities, choosing a school, tips on Individual Education Plans (IEPs) and more
  • Pacer Center
    • Parent center providing support and advocacy for children with disabilities and their families
  • Parenting Special Needs Children
    • Bimonthly magazine filled with practical tips, helpful resources, stories from real life parents and a healthy dose of inspiration
  • Parent to Parent USA
    • Connects trained volunteer Support Parents with parents seeking information, resources, guidance, and support from experienced families of children with special needs
  • Special Needs Now
    • The latest news on special needs parenthood and other important topics on raising children with learning disabilities
  • Shadow Buddies Foundation
    • Creates unique programs and disability or illness-themed dolls to provide emotional support and education to children and families regarding illness, disability and medical treatments
  • Stopbullying.gov
    • Resources to prevent and address bullying of youth with disabilities and special health needs
  • TopSoccer
    • Community-based training and team placement program for young athletes with disabilities, organized by youth soccer association volunteers
  • UCLA PEERS® Clinic
    • The Program for the Education and Enrichment of Relational Skills (PEERS) provides social skills training intervention for preschoolers, adolescents, and young adults with ADHD, anxiety, depression, and other social and emotional challenges.
  • Wrightslaw Yellow Pages for Kids
    • Click on your state to find local resources for children with special needs from adaptive ski lessons to legal representation
  • Zot Artz
    • Adaptive art tools and facilitated art events to entertain and teach children at fairs, fundraisers, and festivals, or as part of everyday recreation, education, and therapy programs

 

Data about Children’s Health

  • Data Resource Center for Child and Adolescent Health
    • Hands-on access to national, state, and regional survey findings to advance the effective use of public data on the status of children’s health and health-related services for children, youth and families in the United States
  • kidsdata.org  (A program of the Lucile Packard Foundation for Children’s Health)
    • Promotes the health and well being of children in California by providing an easy to use resource that offers high-quality, wide-ranging, local data to those who work on behalf of children

 

Digestive Health

  • GI Kids
    • Help and hope for children with digestive disorders from the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition

Education

  • Great Kids
    • Content and tools to help your child learn and grow with resources on learning disabilities, choosing a school, tips on Individual Education Plans (IEPs) and more
  • Think College
    • Dedicated to developing, expanding, and improving inclusive higher education options for people with intellectual disability
  • Wrightslaw
    • Accurate, reliable information about special education law, education law, and advocacy for children with disabilities

Environment

Employment

 

Food Allergy

General Child Health

  • KidsHealth
    • Physician-reviewed information and advice on children’s health and parenting issues

Nutrition

  • ChooseMyPlate
    • Practical information to help children and families build healthy eating habits
  • Kids Eat Right
    • Nutrition tips just for children from the Academy of Nutrition and Dietetics

Parents and Caregivers

  • Angels in Waiting USA
    • Assists in the placement of medically fragile infants and children with nurse foster providers, supporting nurses from outreach to adoption, placing America’s most vulnerable children on the path to permanent placement in a loving home.
  • Parents Helping Parents
    • Parent-directed, community-based organization providing information, training, and support services for families who have children with special needs and the professionals who serve them
  • USC Telehealth
    • Provides free online therapy sessions for parents and caregivers (California residents) to help them cope with the challenges of caring for someone with Autism, ADD/ADHD, physical or developmental disabilities, or learning, behavior and emotional difficulties

Advocacy

  • Family Voices
    • Providing families resources and support to make informed decisions, advocating for improved public and private policies, building partnerships among families and professionals, and serving as a trusted resource on health care
  • Special Needs Alliance
    • National, nonprofit network of attorneys committed to helping individuals with disabilities and their families with public benefits, guardianships/conservatorships, planning for disabilties and special education issues
  • The Arc
    • The largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families.

Tube Feeding

  • The Oley Foundation
    • provides support to home tube-fed adults and children in the form of newsletters, experienced volunteers, an online community forum, annual and regional consumer conferences, webinars, a video library, an equipment supply exchange program, and more. All programs are free of charge for consumers and their family members; all medical information is peer reviewed by clinical experts.
  • Feeding Matters 
    • Hosts a parent-to-parent online forum to address questions and concerns about pediatric feeding disorders and tube feeding
  • Tube Fed Kids
    • Parents of tube-fed children run this forum, in which families share experiences and support each other during their tube feeding journey.

Formula/Supply/Equipment Exchanges

These groups run programs that connect people who need supplies with people who would like to donate supplies. Often, the person in need pays for shipping.

Oley Foundation Equipment/Supply Exchange – (866) 454-7351

Hovannesian Feeding Foundation

The Parker Lee Project

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