Question 2:   My 6 year old son has still not developed any speech (some single words but most are unintelligible). The neurologists & pediatrician don't have any diagnosis other than Developmental Delay which seems like a cop-out. They also don't seem overly interested in finding an answer ("Gee, that’s the $64K question" was the response from the pediatrician during the last visit). How do I go about finding my own resources?

Response:  I understand the dilemma you are in and it is an important one to solve.  Getting a diagnosis is important in receiving services and in connecting with parents who have children with a similar condition.  What you can learn from those parents is priceless.

Let me level with you.  The term developmental delay can be a “cop out.”  Once a child is six years old, it is not just a delay.  Probably they mean profound mental retardation.  Retardation has over 200 causes, and it may indeed be impossible to identify a singular source.  Many people shy away from using the word, but it has a specific scientific meaning which is important.  I suggest you read my other questions and answers on this subject.

Nonetheless, there is a process called differential diagnosis which doctors use to narrow down the possibilities.  I would suggest that you ask the doctors about their specific diagnostic thinking process about your son’s condition.  What have they ruled out?  What is possible?  Do they think he is retarded?

To locate resources in your area, visit the National Center for Children and Youth with Disabilities (NICHCY) at   www.nichcy.org .  Go to State Resources and click on your state.  

You can also try the University Affiliated Program (UAP)  for your state which is the University of Oklahoma UAP at www.main.ouhsc.edu or 405-271-4500.  The UAPs provide information and resources to individuals and families.  The folks there can point you in the right direction.