When we want to find information, our first instinct is to search the Internet. While it’s true there is a lot of good disability information on the Internet, you need to be careful. Some of the information you find will be good, but some is likely to be untrustworthy or even misleading. You must learn to be a critical consumer.
Look to reputable sites for general information about the disability. Nationally recognized organizations and university affiliated sites are examples of places to go for reliable information. Be wary of anyone trying to sell you anything, especially a “cure.” (See New to Disability? for practical ideas to support yourself emotionally.)
As you seek out information, try to find sources that will help you answer these questions:
- How does the disability affect development, learning, movement, memory, behavior, and so on?
- What kind of services (or interventions) help with this disability?
- What type of professional or therapist has the most knowledge about my child’s area of concern or health condition?
As you begin the learning process, keep in mind that each child is unique and the condition may affect your child differently from others. Some information you find about the disability will apply to your child, but some likely will not.
One very good source of information is the Center for Parent Information and Resources (CPIR). Their site has useful information on the following disability categories:
- Attention-Deficit/Hyperactivity Disorder
- Cerebral Palsy (CP)
- Deafness and Hearing Loss
- Developmental Delay
- Down Syndrome
- Intellectual Disability
- Multiple Disabilities
- Rare disorders, genetic disorders, undiagnosed conditions
- Speech and Language Impairments
- Spina Bifida
- Visual Impairment including Blindness
If you do not see the information you are looking for on the list above, check the full disability list on the CPIR site.
The Early Childhood Intervention Program (ECI) publishes a Disability Specific Directory of Resources which includes organizations related to specific disabilities.
The American Academy of Pediatrics has a section addressing developmental disabilities including Autism, Down Syndrome and Pervasive Developmental Disorder
The Centers for Disease Control and Prevention has an A to Z index of disabilities as well as medical conditions.
Syndromes Without A Name (SWAN) is a non-profit tax exempt organization that offers support, information and advice to families of children living with a syndrome without a name.
U.R. Our Hope helps individuals and their families on a journey to find a diagnosis, or help them navigate the system with a rare diagnosis.
Also see Understanding a Diagnosis and Medical Terms on this site. It includes links to more sources of information.
Other disability-specific articles on this site that may help you include Information Resources on Hearing Loss and Resources and Information About Visual Impairment, Blindness and Deafblindness.