Every community has its own organizations, its own groups and its own resources to help special needs families get by — they’re best found with an Internet search, or by asking your local Department of Health or the Area Agency on Aging (yes, even for children’s issues.) But there are several excellent resources that are nationwide groups that have local branches in almost every major town across the country. Here are some of the most ubiquitous and useful:
Parent to Parent matches you with a similar parent (or rather, another parent whose child has the same disability) to share information, emotional support and bonding. They also usually offer several group activities each month, some of which you don’t even need to be a member to discover and attend.
The National Youth Leadership Network works on behalf of disabled children in the later grades, between the ages of 16 and 28. The group is led by the young citizens, and it strives to create opportunities for young disabled kids to develop leadership skills.
The National Collaborative on Workforce and Disability for Youth (NCWD) teaches disabled kids how to deal with their particular disability — and doesn’t stop working with their members until that child is living independently. They offer excellent social-skills and leadership seminars for disabled youths of most varieties.
The MORGAN Project — “Making Opportunities Reality by Granting Assistance Nationwide” — supports families through the struggles of raising a special needs child, particularly (but not only) if they are adopted or foster children. They have a huge quantity of resources on their website, and they also offer direct financial assistance with travel expenses and medical equipment such as wheelchairs.
The Federation for Children with Special Needs provides connections between families with special needs children and their communities, working to build a support network for each family that comes to them. Along with Parent to Parent, above, they offer one of the most significant peer networks for parents of children with disabilities in the country.
The National Dissemination Center for Children with Disabilities is an informational clearinghouse on special needs children from infancy through the teenage years; one of the few resources that will grow with you as your child advances in age and maturity. They provide only verified, peer-reviewed, research-based information, and are very trustworthy.
The National Parent Technical Assistance Center gathers, tests, and distributes ‘best practices’ for every aspect of dealing with a child with special needs, including materials for each kind of special need. They work with local professionals to help you find the care most appropriate for your child, as well as with schools to help the educators better understand each child that comes into their care.
Obviously, this is hardly a comprehensive list of the resources available to families raising children with special needs — ask around locally for resource lists specific to your area. But these national groups have been a boon to thousands of parents like you, and chances are that at least one of them can help you and yours out as well.