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 Moms Support Group
  • Community support group for parents of children with disabilities on the Autism spectrum

• 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

• Centers for Disease Control and Prevention
  • Through the “Learn the Signs. Act Early.” program, CDC and its partners aim to improve early identification of children with ASD and other developmental disabilities so children and families can get the services and support they need

• 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

• CareScribe – Autism Spectrum Disorder (ASD) and Sleep
  • CareScribe provides unbiased and comprehensive information on sleep science with a complete guide to ASD related sleep disturbances. Including the latest treatment options, bedtime tips and additional resources for individuals and families.

Cerebral Palsy

• Cerebral Palsy: MyChild 
  • The ultimate resource for everything about CP

• Cerebral Palsy Group
  • Helps provide free support and useful resources to individuals and families who have been diagnosed with Cerebral Palsy and other disabilities

• Cerebral Palsy Guidance
  • “Providing vital guidance and assistance to parents of a child with cerebral palsy.”

• 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

• United Cerebral Palsy
  • Education, advocacy and support services to ensure a life without limits

Developmental Delay

• Global Developmental Delay Support Group
  • A global support group for parents to share experiences and stories.

• My Life Without Limits
  • Resources for families of children with developmental delays or disabilities, including early intervention services, assistive technologies, therapies, community organizations and government services

Down Syndrome

• National Down Syndrome Society 
  • Resources to help people with Down syndrome become valued members of welcoming communities

• 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

• Hydrocephalus Association
  • Provides educational material, showcases hydrocephalus awareness products, researches treatment and cures, and advocates for families affected by hydrocephalus

Metabolic Conditions

• Genetics Home Reference 
  • A guide to understanding genetic conditions

Muscular Dystrophy

• Muscular Dystrophy Association 
  • Dedicated to finding treatments and cures for muscular dystrophy and other neuromuscular diseases

• National Institutes of Health 
  • Science-backed health information and resources on every topic

Spina Bifida

• Spina Bifida Association 
  • Dedicated to enhancing the lives of those with 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

• Bounce Children’s Foundation
  • Transforms the lives of chronically ill children and their families, shifting all from surviving to thriving. Programs include family adventures specially designed to include kids with complex medical needs, donated tickets for sporting and other events, care packages, resiliency education for parents and an online community of 24/7 support for parents.

• 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

• Sibling Support Project
  • The first national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns

• 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

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.

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

• Healthy Child Healthy World
  • Tips to make your child’s environment safe and healthy from the Environmental Working Group

Employment

• Job Accommodation Network
  • Free, expert guidance on workplace accommodations and disability employment issues

Food Allergy

• Food Allergy Research and Education
  • Education and resources to support the ability of chidlren and adults with food allergies to live safe, productive lives

General Child Health

• American Academy of Pediatrics
  • Dedicated to the health of all children

• 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.

• National Respite Network and Resource Center: National Respite Locator
  • Information and resources on planned or emergency care provided to a child or adult with special needs in order to provide temporary relief to family caregivers.

• 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.

Sexual and Reproductive Health

• Wyoming Institute for Disabilities: Sexual and Reproductive Health
  • Multiple resources for parents and guardians on sexuality, reproductive health, healthy relationships, sexual orientation, talking to children and teens with disabilities about sex, and more.

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

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

The Parker Lee Project