“Function-ability”

I guess “function-ability” is a word? Not long after Caleb was born, we started getting questions about his “functioning level”.  What level was he? Could he get better? Was he high or low-functioning? As a brand new special needs mama, I had no idea how to answer this. He was a baby! We were doing everything we were supposed to be doing – therapy, tummy time, massage, play dates – but I had no clue how “able” he was or would become or how to even know that.

baby with down syndrome during therapy session

In our fast-paced, get-it-done-now world, the question is: What is your ability level and how quickly can you accomplish a task? I guess in the business world, this is the norm. People expect production, and if you can’t keep up, well too bad… The problem arises when a sense of an individual’s worth, or contribution to society is judged upon these qualities.

I think this is a question almost all SN parents get – whatever the challenge might be.  People are curious about what they don’t know. I think when our kids are still young, we can answer honestly “we just don’t know yet”, and leave it at that. Not all kids with Down syndrome (or any other disability) are the same. They can’t be put into a box labeled “Down syndrome” and move on.  Just like typical kids, there are so many variables that enter into the picture. Prenatal care, other health issues, diet, exercise, therapy, social interactions…the list goes on for environmental and physical issues that can impact children’s growth and development.

Not to mention “Splinter skills” – a term I wasn’t familiar with until Caleb came along and we were participating in Early Intervention. Simply put, this was a means to say he was doing some things better than others – according to any scale or measurement. He wasn’t progressing neatly down the graph, but bouncing here and there, trying to keep us on our toes.

My feeling has always been one that places individuals with Down syndrome along some type of spectrum of abilities, similar to those with Autism (or “typical people”!).  There are kids who will excel in almost any arena – “Her speech is great!” “Her physical ability is tremendous!” She does so wonderfully with social interactions!” But I believe – just like anywhere in society – these individuals are not the norm.

Handsome boy with Down syndrome loves his toothbrush pillow

If I had to guess, I would say Caleb is somewhere in the middle of the graph – with a number of great splinter skills (social! 😊) and physical perhaps. We still struggle with a number of things, and our motto is the same as it’s been from the beginning – “We are working on it!” 😊 So if you are a parent of a young child, take a deep breath when someone asks you this question. They really might just curious, might not know what else to say, or might just be annoying (!). A simple “we don’t know yet” or “we are working on it” will most likely suffice. Just keep in mind all those qualities that can’t be measured – friendship, empathy, compassion, love – are just as important, if not more.

Peace!

Karen

Karen is a wonderful person, mommy, runner and disability advocate.  Make sure you follow her on Instagram, Facebook and Twitter.


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