Regardless of whether a disability or chronic health condition is discovered or acquired at birth, during infancy, in early childhood, during the school years, as a teen or an adult, the initial response is often one of shock, disbelief and mourning. All families need time to adjust to the new challenges that such an event brings to their lives. Often, great amounts of time, energy, and money are spent trying to access information and to secure accurate diagnosis and referrals to resources.

My very first words to the wise are: Parents know best. Often when babies or children "look normal," as was the case with our son, it is the parents who pick up on the subtle cues that something might not be right. Many, many times I have heard parents complain that they had some concerns regarding their child but couldn't convince others. Thus, diagnosis, treatment and referrals are delayed.

Approaching clinicians and educators with objective observations often helps parents to convince them to engage in a diagnostic process for the child. Various techniques can be used, such as sitting and observing your child and then writing in a journal what you observe. You can then provide that information in a systematic, organized, and objective manner, or at least as objective as any parents can be about their child's well being, to others.

Gathering information from a variety of sources will help you in seeing your child's development in a more objective light. The resources available on the Web related to all parameters of normal growth and development are astounding. Just plugging the keywords, 'growth and development' into a search engine provided me with more than 2 million sites. When Nick was a baby, all I had to go by was Dr. Spock, what I had observed in other children, what I knew from my nursing background, and my gut instincts - the PC had not yet been invented. So, easy availability of a huge amount of reliable information is a very powerful tool that parents should do their best to sift and sort through for themselves and provide to those caring for their child as well. Of course, judgments need to be made regarding the validity of information, but common sense can be of help here. Well-known health care entities, academic medical centers, governmental sites such as the Department of Health and Human Services (USDHHS Link), and professional resources such as the American Academy of Pediatrics (AAP Link) or the Society of Pediatric Nurses are all good sources of reliable information.