More than just Facts

So I've shared (lots) of information about Down syndrome. You've tried to read through it so patiently. But individuals with DS are more than just a compilation of facts on a paper. In fact, to read it all in such a black-and-white way is very one-sided and impersonal. There is so much more to the story for a person with DS than just a discussion of chromosomes. Yet, when many expectant and new parents get a diagnosis, the black-and-white is all they receive from the experts. As I mentioned before, there is a HUGE number of pregnancies that are aborted when Down syndrome is discovered.

This is due to the fact that we now have access to very clear in-utero tests that can be done and they are recommended to all women now (not just women over 35), but I also think this is due to 2 other things:

1) Upon diagnosis, parents are given very cold, even depressing information, from the medical experts. The information given is sometimes outdated and usually paints a very bleak picture. Those that write about Down syndrome may have very little or no everyday experience with those with DS. Really, any condition or issue can sound awful and bleak when you remove the real life, personal aspect from it. Sadly, and all too common, the doctor with the outdated information is also the one educating the future doctors about Down syndrome and some downright false information stays in the system. Almost every parent of a child with DS, especially those whose children were born quite a few years ago, has some crazy story about doctors telling them what a burden their child will be - that life would even be better if you don't have the child or put it away (as they did 30 years ago). I suppose hearing that weighs heaving on the mind and since we tend to trust everything the guy or gal in the white coat say, we don't stop to think that their information isn't entirely accurate or negatively slanted. That's something that many parents are trying to correct - finding doctors dispensing ridiculous and cruel information and trying to 're-educate' them and providing a service where new/expectant parents can turn to other parents going through what they are facing and give them REAL answers and hope.

2) The second, and I think even sadder, reason for the high abortion rate is that people today are notorious for their sense of entitlement: "We can't have an imperfect child. That happens to other people. Not us. Our children will go on to become great doctors or athletes-and by extension reflect positively on us. I won't except anything less than perfection because the world revolves around me and what I want."

If you can't sense my disdain for this attitude of ending human life simply because it's not perfect (and for any other reason, but that's a different topic), I can put it more bluntly - I don't see a big difference between Hitler & the Nazis who attempted to wipe the Earth of any person they deemed inferior (Jewish people, other races, and the disabled) and those who terminate the life of an unborn child simply because they have Down syndrome (or any other disability). Very few people will ever admit to this mindset and instead say they did it 'for the child.' Anyone that knows me well knows what a non-confrontational person I am, so the few times someone has actually told me that they ended the life of their child with DS "for the child's benefit", it's been very hard for me to tell them what a self-serving line of bull I think that is.

I should occasionally try to be less judgemental though. We will all have to stand before God someday and account for all our doings on this Earth...I'm just glad I don't have to explain that away.

It's just ironic to me that with all the hope, ability, and great access to health care and education that those born with DS have today, the greatest hurdle they still have to overcome now is just being born.

Okay, I got that off my chest. I'll go on.

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(9/07)

As hopefully anyone has seen that has met Grant or any other person with DS, these individuals have much to offer and teach us. Their potential is more limited by the restraints the rest of us put on them then by their actual abilities. Despite the described differences, children with Down syndrome are way more like other children than unlike them.

I think I can speak for other parents of special-needs kids when I say that:

As with any child, children with Down syndrome can grow and succeed when given the right tools and support.

As with any child, they need to feel loved and accepted by those around them. Parents hope and pray they have good friends.

As with any child, a mixture of high, yet realistic, expectations are necessary for fulfilling their potential.

As with any child, they want to have fun and play. They want to get into things and explore the world around them - even if that means a little mischief!


As with any child, they have their own unique talents and interests - music, art, sports - you name it.


As with any child, they are unique in how they see and interact with the world. There is a wide range of emotions and personalities.


As with any child, the milestones achieved should be cause for great celebration - no matter how long they take to get there.


As with any child, they go through the normal stages of childhood and adulthood - asserting independence and desiring more freedom.


As with any child, parents will go through periods of helplessness and unanswered questions yet keep plugging away and loving their child.


As with any child, you want people to see them for their special, individual personality and what they contribute - not for the generalized label that's been affixed to them.


And, as with any child, you hope your child is always treated with love and dignity.


As you can see, children with Down syndrome and their families are not so different from other families. Though it's not good to over-generalize people with Down syndrome because they do exhibit their own unique personality and emotions (they aren't happy all the time - just like you and I experience - despite what is generalized), those with Down syndrome are frequently very happy, exuberant, and friendly people. They can bring so much joy and laughter to their families and others. I think it's no coincidence that siblings of those with any disability tend to grow up to be more compassionate and understanding people, and even gain a maturity about life that their peers often do not.

* * *

So, with all this in mind, here's a tiny list of requests - from me and any other person or parent that deals with any difference/ disability:

*Please use 'people-first' language: say 'a person with Down syndrome' rather than a 'Down syndrome person' or 'Down syndrome baby'. The same could be said of any person with any significant issue or health concern - put the person first. Along the same lines, saying 'a Downs person' or just 'Downs' is emphasizing just a part of who they are above the fact that they are a person. Also, Down syndrome is a condition or syndrome, not a disease.

*Using the word 'retarded' for anything you don't like or calling someone a 'retard' is offensive. Retarded actually means "slower" - not stupid or ridiculous. Find another word to tease your friend or to express something unpleasant. 'Short bus' or 'riding the short bus' is also very offensive in any way that it is used. Come on, you're really comparing someone's silly or idiotic actions to little children that - through no fault of their own -ride a different kind of bus because of their unique needs? Or even worse is when someone even hints that they are making fun of those very children. Even before Grant was born, it made my skin crawl to hear it. (Oh, and President Obama, bringing up the Special Olympics when discussing/comparing your inept bowling is highly disrespectful. I'm very glad you apologized, but it reveals a certain level of your character and sensitivity to those with special needs to say that in the first place.)

*Always talk to those with any disability in a fun, normal way. Though my brother Larry couldn't respond back to me in traditional ways, I always treated him and talked to him like he was....well...my brother. I lovingly teased him, didn't use baby words, and tried my best to act as if his 'abnormalities' were completely normal. When all else fails, just treat all others in normal, dignified way - they way you would want to be treated if the situation were reversed.

Please know that I'm not hyper-sensitive or consider myself the politically-correct police AND I realize that, unless a bunch of 14-year-old boys read this blog, pretty much all of the people that read this aren't the type to say offensive things about the disabled anyway. But it's nice to put this all out there into the universe - maybe those that read this can educate others.

Also, as I mentioned on Day 1, I'm open to any questions people have. I want people to know more about Grant and Down syndrome if they care to know. I'm pretty much an open book so never hesitate if you wonder about something.

Are you still reading? Seriously, you're amazing. Believe it or not, tomorrow is the final post because tomorrow is World Down Syndrome Day. I'll share one of my favorite short stories and if you'll indulge me a bit longer, a tiny bit more of my thoughts.