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The Trials of TrigWhat special needs does a special-needs baby really have?

By Nate DiMeoPosted Friday, Sept. 5, 2008, at 4:55 PM ET

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Vice-presidential nominee and Alaska Gov. Sarah Palin told the Republican National Convention on Wednesday night that she would be an advocate for "the parents of special-needs children all across this country." Her own son Trig Paxon was born in May with Down syndrome. What are the special needs of a special-needs child like Trig?

They're not so much "special" as they are time-consuming. Babies with Down syndrome have all the same needs as babies without, but since they're slower to develop, they need them for a longer time. For example, a child with severe Down syndrome might not be able to walk or in some cases even sit up on his own until the age of 2, so his parents might have to spend an extra 12 to 18 months carrying him around. The same kind of delays extend to potty-training, drinking from cups, and using spoons—things that make for an independent baby and a less haggard parent.

Breast-feeding an infant with Down syndrome can be particularly difficult. A child like Trig Palin likely has diminished muscle tone and a small mouth, both of which make it harder to learn how to latch on to the nipple and suck effectively. Babies with the syndrome are usually sleepier than typical babies, so mothers often struggle to keep them awake while feeding. And parents might feel pressure to breast-feed: Down syndrome experts emphasize the putative benefits of mother's milk—immune-system boosting, bonding, muscle development—for this population of children.

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Kids with Down syndrome can expect to be making more trips to the doctor's office than kids without. They are prone to developing heart issues as well as problems with their hearing, vision, respiration, and digestion. The affliction varies greatly from case to case, so a child may have none or several of these issues. But they very well may need surgeries or additional therapies during their first months of life.

Parents also need to find time for physical therapy and "pre-speech" therapy. Research suggests that these interventions can significantly speed cognitive development for children with Down syndrome and may prevent common physical ticks and certain speech impediments. According to federal law, each state must provide these services; in Alaska, for example, the interventions are free, and the therapist comes right to your door. Therapy sessions can take place as often as several times a week until the child reaches school age, at which point a different set of professionals step in to address a new set of challenges.

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Explainer thanks Susan Dell of Rhode Island College and Gail Williamson of the Los Angeles Chapter of the Down Syndrome Society.

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Nate DiMeo is a journalist in Los Angeles.
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