As we mention in our resource on Two Syndromes, there have been changes over time that have contributed to some of our families with younger children with Down syndrome not relating to the life stories of some of our older patients with DS. There are four main areas: expectations, life expectancy, opportunities, and goals.
Years ago, we saw a woman with DS in her 50s who was brought to us by her brother. “I don’t know what to do,” was a phrase he kept saying. His sister had lived with their mother in a distant state for years. Shortly before we met the woman with DS and her brother, their mother had passed away in her late 80s. The family had made no plans for the woman with DS after their mother’s death. The doctor had said she would never live to her 20s and certainly not outlive her parents. So no plans had been made.
Clearly, there are responsibilities of making goals – both for the family and the person with DS.
There is a growing privilege of being able to make goals as well. With higher expectations, longer life expectancy, and increasing opportunities, we are seeing people with DS plan for the future in ways never before dreamed. More independence, college and other post-high school programs, new living situations, jobs, etc.
Like all people, people with DS have varied levels of skills, interests, and desires. New goals are being more individualized.
With these changes over time, will we really see “Two Syndromes”? Time will tell how far we will go. Perhaps we will be as surprised as a doctor from 50 years ago would be to see people with DS now if he had predicted people with DS would never talk, walk, or participate in society. His understanding of DS would be shattered when he saw people with DS working in his grocery store, his office, McDonald’s, on TV, etc.
We can’t say definitely what changes will occur in the next 50 years but it is fun being along for the ride.