Monday, March 9, 2009

"Normal" Isn't

An acquaintance recently told me that she didn't notice anything different with Nicolas. In fact, she thought that he just "walked to the beat of a different drum". Yeah - that's one way to put it. Those artsy people are different - I'll agree. It's the "exchange" that makes them that way, or at least that's how I've always thought. Maybe it's genetic... I dunno. But, what I do know is that if someone who is an artsy person isn't allowed to express themselves through their art - painting, drawing, sewing, music, etc. - then they are merely existing and often just surviving. But - when they are doing what they love, and using their gifts, talents, abilities or just enjoying their own creativity, then they are thriving.

Big difference between thriving and merely existing. When I first suspected that there was something not right with Nick, I thought it was related to his blood sugar or to eating sweets on an empty stomach. After all, he learned to ride a bike, read and was learning to play the piano. There couldn't be anything really wrong with him then, or at least in my limited thinking. For months, I struggled so hard to find a connection to his odd behavior. I journaled about his sleep habits, his diet, his environment - even when he took his baths. I could not find a common denominator. The only thing that was consistent, was that there was no longer a "normal".

Normal didn't exist and it still doesn't. I had never heard of high-functioning autism, autism spectrum disorders (ASD's), or PDD-NOS, (Pervasive Developmental Disorder - Not Otherwise Specified) which in my understanding is a middle condition on the spectrum that those with it exhibiting some, but not all, of the symptoms associated with classic autism. This almost always includes difficulty socializing with others, repetitive behaviors, and heightened sensitivities to certain stimuli/sensory defensiveness. Some of the symptoms are pretty severe and others are minor, but - they are all different; meaning that not everyone labeled with PDD-NOS is exactly like each other or will have the same symptoms/characteristics.

Ok - as long as we're talking about labels, let's l
ook at Asperger's again. Asperger's can also surface at a later age, after 3 or 4 and PDD-NOS is so close to Asperger's I often confuse the two. Again, it's my understanding that those with Asperger's usually don't show signs of major cognitive difficulties and pretty much hit most of their milestones within reasonable time markers. Because of this, Asperger's kids are often called “high-functioning” or as having a “mild” form of autism, at least compared to others in the spectrum. To most, they may seem just like other kids… but not quite — socially awkward in a way or using mannerisms thataren't easily understood. Nicolas is not understood. His happiness and delight is frowned on, just because he is happy or enjoying himself in a way that seems “uncool” to some kids. I watch it happen. It’s sad, but – again, I am coming to terms with this.

Nicolas is also very literal. Poor kid, if only everyone used proper grammar...

I personally think that doctors and healthcare providers miss seeing it in younger kids, until there are enough wrongs for autism to show. Especially if it shows later and has "built up" with multiple factors contributing to this illness or condition. For us it took some time. It takes time for the damage to occur, build and then, when symptoms are more pronounced or displayed - we see it. And, by this point, for many of us, it is really, really hard work to recover our kids. But we do… and I will.

1 comment:

  1. Your blog is very educational to me, as I'm not that familiar with all the "A" words. I definitely have a child who is artsy/creative and walks to the beat of his own drum.