Syndrome Makes Him Different, Yet Our Son Is Creating His Niche

On Sept. 3, 1981, my husband Ross and I welcomed our son, Dustin, into the world. It took 45 minutes to have him breathing on his own and another two weeks in intensive care before he came home.

We learned quickly that we could not set the goals for Dusty. He would set them at his own pace. We appreciated the smallest things he could do.

When he was a few months old, doctors told me they suspected Prader-Willi syndrome but I’d never heard of it. I only heard them say he wouldn’t live very long.

At the University of Washington, tests failed to confirm the diagnosis. But as time went on, Dusty’s behavior got worse and worse.

At age 5, he backed our car out of the garage with the garage door closed. Later, he called 911 and convinced the dispatcher somebody was trying to kill him. The police had surrounded the house and Dusty’s father stepped onto the front porch in his boxers with his hands up.

Dusty also showed the craving for food which is typical of Prader-Willi. He started sneaking food. He sometimes even ate the dog’s bones. During a visit to Chuck E. Cheese’s, he took pizza right off a lady’s plate and ate it as she screamed. He grew heavier and heavier.

When he was about 7, we returned to the University of Washington. This time the tests were positive. Then we really went crazy, reading everything we could. We joined a support group and attended meetings on the coast.

We learned that Dusty would have a low IQ and be addicted to food. His behavior would become uncontrollable. He could not reproduce and his life would be short.

This tested our patience and especially our marriage. We really learned to rely on our faith in God.

As he got older and outsized me, Dusty could be rough. The state realized our desperation and helped us place him in a residence. With lots of prayers, Dusty moved out just before turning 18.

We made sure we found him a place where everybody is happy and they’re treated like adults, even though they’re supervised 24 hours a day. They’re actually renting the house themselves.

We can visit him often and he goes to church with me every Sunday.

Now, after years in a world filled with things he could not have, places he could not go and people who made fun of him, Dusty, with his roommates, is creating a world of his own.