Thursday, October 28, 2010

Just in Time for Halloween--The Super Downs Kid

Within weeks of Emma's birth, I heard it for the first time: The doctor said Emma is a Super Downs baby, right?

Or later:  Is Emma high functioning Downs? What level of Downs is she?

Even then, with many of my opinions about Down syndrome still emerging, I knew that wasn't quite right. First of all, what is a "Super Downs" baby or child or even adult? What do they mean when they say high functioning? Why is it so important that you would ask someone such a thing about their child? How on earth could you think a doctor or anyone else might ascertain that my child with Down syndrome would have better skills than others with Down syndrome when she was just weeks old? Should we give her back if she's only going to be a normal child with Down syndrome?

Here's the thing, people with Down syndrome have a wide range of abilities, a wide range of personalities (one word: Vera) and a wide range of functioning. In the past, however, when most people with Down syndrome were institutionalized and were rarely seen in the real world, most of them functioned at a very low level. They weren't taught to read or write, didn't have normal interactions with family or with the world around them, were likely medicated/sedated, and they never were taught to do things for themselves because the nurses and aides thought it was more trouble to teach them than to just do it for them.

Due to greater access to early intervention therapy services, preschools, full school inclusion by law, not to mention the nearly 100% of children with Down syndrome who are NOT placed in institutions, we can now see a much fuller range of functioning. We can see that most people with Down syndrome learn to read and write, learn about a variety of subjects and have sincere and earnest interest in a few, just like the rest of us. They have abilities that far exceeded the expectations of even just a couple of decades ago. Each of my girls excel in very different areas and have weaknesses in very different areas. People with Down syndrome are not a homogeneous group anymore than any random group of people.

Yes, there are some who are much more debilitated than others, although those folks usually have more diagnoses than just Down syndrome that work against them. Yes, there are also those who are much more successful in school than others; a not insignificant number of people with Down syndrome have IQs that don't even fall in the range deemed "mentally retarded." I assume these are the Super Downs kids (can I tell you how much I hate that name?).

For those of you reading this who don't have children with Down syndrome I must ask: Is this ringing any bells? Does it sound like the typical population of children you know? Some children don't do very well in school, often due to extra problems they have that a typical child doesn't. Some children do very well in school and have IQs that fall outside the range deemed "normal." They are the scholastic superstars.

So back to the original question, but putting it back on those who asked: The doctor said your little one is a scholastic superstar, right?

Or to the parent of an older child: Is your little Johnny functioning at a high level?

How about this: let's remember that all children have strengths and weaknesses. Let's remember that God made them for a purpose, and those purposes are not always scholastic. And please, let's remember that all parents want to know you value their child above their child's achievements. I'm pretty sure your child or grandchild wants to know that about you, too.

Finally, let's put the Super Downs hero to rest, just in time for Halloween. She's not real after all, but she sure is scary.

How scary? As scary as one of Luke's first directorial efforts: Vera Spicer starring in Spider Da Ma'am!

1 comment:

Anonymous said...

good grief! How many years ago was that? Precious.