Two Opposite Issues

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Part 1: All is not Down syndrome

A Grace Note shared by Advocate Health Care quoted Jim Wallis: “You don’t know something is true until it changes your life.” This occurred early in the history of the Center for what I call “Two Opposite Issues.”

The first issue is that “All is not Down syndrome.” A few weeks after the Center opened in 1992 a simple but poignant example of this occurred. The mother of a man with Down syndrome in his 20s called. He had a cough that had been present for 4 weeks. He had been to his doctor three times and they were repeatedly told, “It is just the Down syndrome.” We didn’t know much about DS when the Center first opened so I quickly pulled out the textbook but couldn’t find cough as a symptom of DS. I asked the family to come on in for an appointment. The man’s exam was consistent with pneumonia, the chest x-ray was consistent with pneumonia, and we prescribed antibiotics. His cough resolved (but he did still have Down syndrome).

While it is a simple story and seems like a simple lesson, it stuck with us very clearly. People with DS can develop illnesses that are treatable; all is not Down syndrome. Families share stories that this adage is not always followed and evaluation is skipped and the diagnosis becomes “It is just Down syndrome.”

Each person deserves to be assessed and treated as an individual.

Part 2: Common characteristics

On the other hand, there are a number of common characteristics of people with Down syndrome that deserve consideration. Clearly from the first issue we know that not all people with DS have these characteristics and those that do have them to varying degrees. However, to ignore that these are common characteristics can cause one to miss important opportunities.

Some of the characteristics that we commonly see are:

• Self-talk

• Strong visual memories

• The Groove

Many people with DS talk to themselves (as do many people without DS). We became interested in this many years ago because many of our patients were coming to us for the first time on anti-psychotic medications. Many were on these medications because they talked to themselves. We thought those medications were not indicated in nearly all the cases. We believe it is a developmental-stage appropriate behavior, a coping mechanism, a learning strategy, and a means to counter boredom. In general, it is a healthy characteristic. The main problems is that others often don’t understand so directing this behavior to private spaces may be indicated. A change in self-talk can indicate a medical, social, or psychological concern or stress.

We commonly see that our patients have strong visual memories. Words and especially pictures are often much better retained than verbal communication.

The Groove is the tendency to do things repetitiously or the same. This helps many people with DS function better, do a superb job at work, and do tasks in a precise manner.

If a person with DS has one or more of these characteristics (and in our experience most people with DS have one or more of them), then ignoring them can lead to challenges. Suppressing self-talk in a person with DS may reduce their ability to learn or perform tasks. Insisting on using only verbal communication to teach a person with DS may cause the person to learn less or seem less skilled than he is. Many people with the Groove need to complete a task before moving on to the next one. Ignoring this need leads to many problems at times of transition.