Friday, March 19, 2010

How to Smack Your Doctor!

Sunday, March 21st is World Down Syndrome Day! Why, you may ask, is this day set aside for Down syndrome? Well, it's because 3/21 is representative of the triplication of the 21's chromosome which causes Down syndrome.

Huh?

I know... right? OK - so If you Google "Down syndrome" you will likely find all sorts of glorious explanations about chromosomes and symptoms along with a long and illustrious list of the things that will be WRONG with individuals with Down syndrome.

If you are a mother who has just learned your baby has Down syndrome (either in-utero or after the birth of your baby) you may have a visit from a doctor who unloads a dump-truck full of medical jargon on you about all the (mostly negative) things he or she thinks you should know about Down syndrome.

So - please raise your hand if you are the parent of a "typical" child and some doctor sat you down after your kid was born to go over all the things that could possibly go wrong with your baby??

Anyone? No one??

No - when you have a "typical" child, it is more likely people will speculate about whether the child will someday be a doctor, or a football player, or a race car driver. Nobody comes in to go over the likelihood of heart conditions, digestive issues or the percentage of children that develop leukemia!

Why is it that few new parents receive BALANCED information?

When The Skink was born, I knew very little about Down syndrome, and now the doctors were filling my head with all the possible negatives about the condition they thought I should know - regardless of the fact that MY daughter did not even HAVE any dangerous heart condition, signs of strangulated bowels, or any of the other horrible problems that SOME people with Down syndrome have. Hellllllooooooooo - guess what? SOME people who DON'T have Down syndrome have those conditions too, but I'll bet their parents didn't get all the doom and gloom information on these problems until they actually knew the child HAD the issue!

The doctor who informed me about Down syndrome even went so far as to tell me there was no way to know how "profoundly" my daughter would be affected. Knowing what I know now, I realize that has got to be one of the most stupid and outdated concepts still floating around! There is no such thing as a profound or mild case of Down syndrome. It's either Trisome 21 (a triplication of every 21st chromosome) or Mosaic Down syndrome where only some of the chromosomes have triplicated, and neither is an indicator of how smart your child is.

Just like any child, IQs will vary. The people with Down syndrome who were classified as "profoundly affected" back in the dark ages, actually had secondary issues like autism or early-onset Alzheimer's. Just as any child from any family *might* have autism, children with Down syndrome can have autism too, making them seem less aware or less able to learn.

Now the TRUTH about Down syndrome that every parent SHOULD be told:
Most individuals with Down syndrome grow up to hold jobs, live independently, have fulfilling relationships and, most importantly, are happy!

WOW! Who knew?

When Iraq was born, I didn't get any doom and gloom information about the stuff that could be *wrong* with her. She looked completely normal and doesn't have any extra chromosomes. In fact, it took us 6 whole years to get a proper diagnosis for Aspergers (autism spectrum disorder) AND anxiety disorder AND childhood depression.

Now - ask me which child has been harder to raise. Ask me which child has required more life-style changes for mom and dad??? Go ahead...

Honestly? Are you seriously ASKING me that question?? (kidding)

Our little Skink with Down syndrome has always been happy doing what ever was on the schedule for the day. In all honesty, the family schedule has always been created around Iraq's needs. Iraq's frequent melt-downs, anxiety over strange things and tendency to become over-stimulated in a variety of settings have dictated where we can and can't go with her, what we'll need to bring and how we need to prepare.

The Skink just seems to enjoy what ever we do. The Skink is creative, and smart, and funny, and engaging. She is just a kid like any other kid. She is an individual. She loves school. She can read over 250 words at the age of 3. She enjoys new experiences, and museums and trips to new places. She smiles a lot. She loves going to the park. She likes to help out around the house. She learns new things every day. She makes me smile every day!

And THAT, my friends, is exactly the information I wish I had been given about Down syndrome.
What is Down syndrome NOT?? It is not some horrible thing. It is not embarrassing. It is not an indication I'll be spending my life providing for somebody who can not provide for herself. It is not something sad. It does not mean my daughter will have horrible medical problems. It does not mean she won't graduate from high school, or even go to college. It does not mean she won't have a job she loves someday. It does not mean she won't get married and have love, happiness and joy for the rest of her life. It does not mean she'll never experience heartbreak - just like the rest of us. It is not something I am afraid of or upset about!

She is just my kid. And I love her with all my heart!


So, lets CELEBRATE World Down Syndrome Day - and share the truth :o)

*Disclaimer: The blogger does not in any way advocate the smacking of doctors. Some of my best friends are doctors and do NOT require smacking. The only doctors that should be smacked are those that express smack-worthy and unenlightened opinions about Down syndrome. This blogger advocates properly educating smack-worthy doctors and asking them to present a balanced (and non-religion based) picture about life with a child with Down syndrome by providing positive information along side all the medical crap.

1 comment:

  1. You must have had the same doctor/geneticist I had 24 hours after giving birth. The one who told me to not ever stress my kid by even attempting piano lessons! I felt like I had been kicked in the gut. P.S. My typical 8 year old's orthodontist issues cause me more angst than any "issues" my little guy has had.

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