Reasonable expectations for a special-needs child

Our youngest daughter is 13 months old. She has several complex medical diagnoses, including Septo-Optic Dysplasia (panhypopituitarism, hypothalamic dysfunction, blindness) a seizure disorder, and global developmental delays.

Her gross motor skills (and speech) are the most delayed aspects of her development. She does not yet sit unsupported, roll over, stand, etc. She does not babble or say any words. She does play well, interacts with us fairly well, and is a complete joy to be around.

When I tell her doctors that I believe she will grow up with normal cognition, I get funny looks. No-one has ever said that they believe she will be mentally compromised, but no-one has said that she won't be, either.

My mother is a pediatrician, and is highly optimistic, but I believe she is too close to the situation to give me an objective opinion.

I want to know if my expectations of normal cognition are unrealistic. I hate playing the waiting game, and not knowing how her life is going to be. Any advice is appreciated.

[Kevin Kennedy, Ph.D.]

Intellectual development in a child who displays De Morsier's Syndrome is impossible to know early on. You are not being unrealistic in thinking that your daughter might have intelligence somewhere within the normal spectrum. But it is also very likely that she will dispay some cognitive problems, such as learning disabilities, and perhaps mental retardation. The prospects of her displaying retardation increase with the severity of the rest of her symptom picture. The more severe the symptoms, the greater the chances of cogntive impairment. So this is one of those situations when time, and development, will tell.