Showing posts with label I need to publish this because the Viking just brought home sushi and what's worse than cold sushi. Show all posts
Showing posts with label I need to publish this because the Viking just brought home sushi and what's worse than cold sushi. Show all posts

Friday, July 6, 2012

On being a Down syndrome superstar

Or not.

For a lot of people a way to deal with a Down syndrome diagnosis is to go online and see what all a person with Ds will be able to do regardless of the diagnosis. For many parents this is how they initially survive. By seeing that a life with a kid who has Ds isn't all that different from a life with a typical child. There'll still be laughter, laundry, vacations, snotty noses, and school graduations. Needing to know this is only natural. And vital in the place most of the parents find themselves when they are faced with a diagnosis of a disability, especially one that entails "mental retardation" as a lot of the current medical literature still calls it, regardless of there being numerous much better, untarnished by colloquial use to denote all things horrendous, equivalents.

(While you're here, why not click once [but remember to return!] and take the pledge to end the r-word. Go on!)

For many parents it is important to see that life can go on pretty unchanged, fairly unaltered, or at least to know that a diagnosis doesn't mean that they'll never take another vacation, never enjoy another juicy piece of celebrity gossip, never go on date nights anymore, or never drink another glass of wine. Especially since often an ignorant doctor or a nurse will do, in my mind, the greatest disservice of filling the expectant or brand new parents with the gloom and doom their life will most certainly be filled with from then on. Why these professionals, who should be offering current and multifaceted information and support, feel the need to do this, is one enigma I'll probably never be able to crack. Or even begin to understand.

For new parents it is important to see that everything will most likely be fine. Just fine. And that feeling of drowning will eventually pass and be replaced with immeasurable joy and happiness.

And acceptance.

New parents need to know that their kid could be one of the 'Down syndrome superstars'. That kid who will stay smack in the middle on the typical growth charts, learn to crawl alongside his or her typical peers, say 'mama' and mean it when his or her siblings did, read at 4th grade level in the 3rd grade,  and just pretty much not really differ from his or her typical peers, or more often than not perform much better than his or her typical peers.

But. I think in reality it is important for every single parent on this globe to believe that they could birth a genius. A second Einstein. A Nobel prize winner. A hero of our times. A president. A renowned actor. A celebrated composer. A prolific author. Someone who will rise above the masses and lead them instead of just following.

But not every kid is built that way. Some kids will make up the masses.

Not every kid with Ds will keep up developmentally. Not every kid with Ds will break through the ceiling and do things no kid with Ds has ever done before them.

Every kid is special, but most just to their parents. And the occasional grandma.

But that doesn't mean they are worth any less.

Real acceptance arrives in the form of the realization that a kid might never be a 'Down syndrome superstar', that there might be significant delays, and that there might not be flurries of development regardless of hours and hours spent on exercises and therapies and directed play. No sudden changes shortly after starting supplements. That he or she might not only lag in development when it comes to the typical peers, but with other kids with Ds as well.

But it also arrives in the form of the realization that still, regardless, life is fine. Just fine. There will still be laughter, laundry, vacations, snotty noses, and school graduations.

And that most days Down syndrome doesn't even enter the parent's mind.

But summer vacation does. And the sad disintegration of TomKat.

She'll always be a superstar to me. Can't you tell?