Recently we brought you Scoop Essentials: Coping With A Diagnosis, a conversation about overcoming the guilt and anger that often comes along with the diagnosis of a disability and steps to moving on with your life.

Now, genetic associate Louise W. Gane from the M.I.N.D. Institute at the University of California at Davis answers your questions about how to obtain a good diagnosis and how to deal with it.

My son was diagnosed over a year ago, and is doing well. But, I find myself jealous and almost hateful of others and their “normal” children. I feel terrible that I have these feelings. How can I deal with this? — Rita, 38

Louise W. Gane: It is okay to feel “jealous and almost hateful of others and their ‘normal’ children.” It’s just that we are taught that these are “bad” feelings and we shouldn’t feel this way. I don’t agree with that logic. I think your anger is appropriate and you should get to ask “why me?”

I can’t answer the why, but I can say the following. When you are feeling angry, jealous, etc., you are taking that time away from your child. So what you might want to try is that when you experience these feelings, accept them. Then redirect that energy back to your child and how much you love him (not compared to anybody or anyone else), how much joy he brings you, and be thankful for the time you have together and all the things that the two of you are learning together. Plus, put energy into picturing a happy future for you and your family. We truly can create our own future by visualizing it and now is your time to be actively visualizing your future. You can do this by creating a positive from a negative and you will not feel “terrible” but will feel happy and reassured.

I work in special education and have worked with parents of children ages 3 to 10 years who seem to be in “denial” about the disability diagnosis and prognosis. I want them to have high expectations, but it also helps to be realistic in the short term. Is there a way we can compassionately provide parents a balanced view of the diagnosis and what can reasonably be expected in the near term? What would you suggest in terms of communication and language to use in such circumstances? — Tracy S, 42, California

Louise W. Gane: You pose an interesting question and one where there really is no “right” answer. When children with special needs are young, it is important to be encouraging and to maintain hope in the child’s potential. As parents, one wants a child not to be labeled or limited and this can be seen as having high expectations (this can also be viewed as having “unrealistic” expectations), which can make it difficult for the professional working with the child. Some may call it “denial” when parents or family members do not see the limitations that may be there, but I see it as “hope.” For any child it is important to recognize their individuality and to play to their strengths.

If you would like to see the parents focus on the present and near future, then you may find it helpful to work with parents on what has been and will be achieved in a specific period of time and how that relates to the child achieving their fullest potential in the future.

It is hard when parents become more aware of the gap between their own child and that of his or her peers. This usually occurs as a child ages and is expected to learn and use more abstract skills. I often explain (in layman terms) to parents the developmental process between concrete and abstract skills. I reassure parents that their child is not losing skills (as in the case of fragile X). They are just not able to master the skills at the pace we would like them to. Therefore, we have to address the child’s weak areas by maximizing and adapting the strong skill areas and that this may mean pullouts and extra help, which will hopefully be successful in placing the child back into the classroom feeling more secure and successful.

I try to be realistic but always add hope for the future and emphasize that whatever is being done today is to help maximize the child’s success for tomorrow. The key is in the communication, partnering with the parents and providing continued information about the child’s efforts and successes.

What is the best way to obtain a helpful “diagnosis”? Public school districts usually go through a battery of standardized testing often administered by “diagnosticians” with no professional credentials. Because such testing relies heavily on reading and oral expression, it doesn’t seem to provide much insight on how to help a child. Doctors and psychologists don’t seem to have much of a clue either. Any suggestions? — E.E., 45

Louise W. Gane: A “diagnosis” can be hard to obtain. At our clinics, the minimum we ask for is a Stanford-Binet, WISC, WAIS, or if the child is nonverbal, a Leiter or Mullen for cognitive assessment and to ascertain if there are splits in cognition skills. If we are trying to make a diagnosis of autism or to rule it out, we use the ADOS and the ADI and the DSMIV. In addition, depending upon the child’s difficulty, we will ask for testing looks for ADHD, auditory processing and anxiety issues underlying the learning difficulty.

Many of these tests are very costly and schools often cannot afford to do the more specialized testing. In California, we have regional centers, which can often perform the needed testing. Also, the child’s difficulties may indicate the need for a genetic evaluation by a geneticist or developmental assessment by a developmental pediatrician. Ideally, to make a diagnosis, a team of people are needed. Even then, the reality is that often we don’t know what the underlying cause (etiology) of the child’s difficulty is. This can make it very frustrating for a family.

Read all of Disability Scoop’s original series Scoop Essentials. Your Life. Your Issues. Your World.

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