As we mention in our resource on “Two Syndromes,” there seem to be four main reasons for the differences noted in the different generations of people with Down syndrome – expectations, life expectancy, opportunities, and goals.
Expectations is the first of the four we’ll address.
When many of our older patients were born, their families were told at birth that the person would never talk, never walk, and never do much of anything. Families were told to expect that the individual would not be able to learn, “would never go beyond the ability of an infant,” and would be completely dependent on the family for everything. Many were also told that if they kept the child with Down syndrome in their home, they would expect that it would “ruin the rest of the family.”
Thankfully, we have a much better understanding today. However, some of our older families were really diving into unchartered waters. Many of our families with older family members with Down syndrome bucked the system, took their child with DS home, and ignored the professional advice they received.
The three recurrent themes I have heard from those families are:
We took him home and loved him.
We treated him like our other children.
We expected that he would learn. We didn’t know how much, but we approached each day as a new learning opportunity.
These courageous families (although they wouldn’t describe themselves that way) paved the way for the continued progress we see today. They helped break the first barrier – low expectations. “If you expect nothing, you usually get it.”
With increased expectations and changes in life expectancy (addressed in our resources on life expectancy), a change in opportunities and goals followed. Many, many families have also told me that not only did taking their child with DS home not “ruin the family,” he/she has enriched their lives in unimagined ways.