Magazine article The Exceptional Parent

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Magazine article The Exceptional Parent

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Intrauterine growth retardation, dysmorphic facial features--undiagnosed

My 31-month-old son Pedro was born prematurely weighing 2 lbs. He has intrauterine growth retardation (low birth weight, small head circumference, and short body length); dysmorphic facial features; a highly arched palate; asymmetric skull with a high forehead; gastro-esophageal reflux; and hyperthyroidism. IgG (immunoglobin) levels are low for his age (making him more susceptible to infections), and he also has recurrent episodes of elevated temperature. He has experienced three seizures, and went through a cardiorespiratory arrest when he was 2 years old. The arrest put him in the acute care unit for one month, where he was placed on a ventilator. Now he does not talk at all.

At this time, he has a gastrostomy tube; failure to thrive; psychomotor delay (delay in such skills as feeding one's self or drawing, which require thought as well as physical movement). He also receives occupational, physical, and speech therapy at home. He is unable to crawl and stand.

We have exhausted all of the available resources in Puerto Rico, having consulted with geneticists, endocrinologists, neurologists, etc. We are desperate for a diagnosis, and would like to get in touch with any parents who have a child similar to Pedro. We are also wondering what the future holds.

P.C. and M.C., Cayey, Puerto Rico

Looking for life-skills program

I have a 13-year-old daughter who has spina bifida. Cognitively, she is fine, though when given a set of directions, the first portion is processed and the rest is lost. She is, however, enrolled in regular classes and receives speech therapy.

Although she is able to complete some tasks on her own, I work with her on the self-help and life skills I feel she will need to know when she becomes an adult. So far, she is able to bathe herself (though she has to be helped into and out of the tub), she can catheterize herself, do some dressing, and she has learned minimal cooking skills.

While I am proud of all of these accomplishments, my daughter still has difficulty picking up skills. I am not sure if she is not picking them up because I am not an effective teacher, or if she thinks that people are eventually going to do these things for her. She is in a new school this year, and unlike her old school, her curriculum does not seem to entail any work on life-skills. …

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