Sunday, October 28, 2012

In which I say 'my kid's a frikken individual' in 21 different ways

There are quite a few things I wanted to write about during this month of October - the Down syndrome awareness month. There are many things I would like for people to know, to understand, about Babe, about Down syndrome, and about Babe having Down syndrome. There are so many stereotypes and so much outdated and even completely and utterly wrong information about Down syndrome and people with Down syndrome out there that there aren't enough blogs or posts about it to almost even begin to make a dent. So I really should do my part, to better, and certainly more often, be that tiny stream of facts and tidbits flowing towards the great ocean of correct information.

But I've been living instead. Our little family of three has been enjoying life and our new surroundings of Seattle, Washington, learning to exist at sea level without needing to know where the oxygen tank is at all times and how much O2 is left in it, and buying rain gear and learning to wear socks (and not just in sandals) again. Babe has gotten to know Seattle Children's Hospital pretty well, I've managed to get Babe's Early Intervention services started, and Babe's been busy making new Danish, Finnish and American friends just by being her usual hollering (and I do believe she has discovered yet another level of loud) self. The Viking's been hard at work in his new and exciting position, and we've even bought a house. Well, almost, we're still on planet escrow (which really should have more wine on it, but I digress).

So while I have thought about Down syndrome, I've also thought about paint colors, rubber boots with houndstooth pattern on them, furnaces and air ducts, swing sets, doing yard work, finding a hair salon edgy enough for my needs, fall colored leaves, Starbucks, whether a Mexican Costco membership counts in the US (it does), lead paint, playgrounds, home inspections, Gymboree music classes, gutters, driving according to the rules of the road, and many more mundane and grand things.

Life.

That certainly does not revolve around Down syndrome.

So here they are, 21 quick facts everyone should know about Down syndrome, so that I can go back to looking at color charts and the new Land of Nod catalogue:

1. Down syndrome is not a syndrome. It is a genetic condition arising from having three copies of the 21st chromosome instead of the more common two copies.

2. Down syndrome occurs randomly at the frequency of around 1 in 691 births and is the most common genetic variant.

3. A person with just Down syndrome is healthy. Down syndrome is not an illness.

4. All people with Down syndrome are individuals with unique personalities and full emotional repertoires.

5. A person with Down syndrome is always a person first, not a Down syndrome child, a Down, or Down syndrome. They have Down syndrome.

6. Down syndrome is neither mild nor severe. Different individuals have different challenges and are equipped with different strengths and weaknesses.

7. A Down syndrome diagnosis is not a reason for condolences. Having Down syndrome is not cause for pity.

8. individuals with Down syndrome are capable and once they become adults they should be treated as such. People with Down syndrome do not stay children forever, nor are they like children as adults.  

9. People with Down syndrome are not angels, special, or in any way 'sent here for a purpose'. Down syndrome is biology.

10. People with Down syndrome can date, have sex, marry, go to university, have jobs, pay taxes, break up, get drunk, divorce, make good and bad decisions, and learn (or not) from their mistakes.

11. A person with Down syndrome can be as perfect as the next person. Down syndrome does not equal 'less than'.

12. Down syndrome is not something to be fought, eradicated, or in need of an ass kicking, it is present in every single cell of the individual.

13. Bringing up a child with Down syndrome does not require special skills any more than bringing up a neurotypical child does.

14. Down syndrome is not an excuse for bad behavior and it is not a reason for allowances. Down syndrome in itself is not the cause of any kind of behavior.

15. Down syndrome does not make an individual ugly, nor does it make them beautiful. It doesn't make them anything.

16. People with Down syndrome are not "too stupid to understand" when they are ridiculed.

17. Individuals with Down syndrome can be valuable and productive members of their communities as long as they are expected and given the chance to contribute.

18. People with Down syndrome are not a burden on society unless they are made that by lack of fair opportunities and expectations.

19. Down syndrome is not a subject to be avoided. Questions are good, ignorance is bad.

20. Down syndrome is no joke, but it's not a sentence either.

21. A baby is a baby is a baby. A child is a child is a child. A person is a person is a person.

Life already comes with challenges, like Mittens, don't make it harder by being ignorant about Down syndrome. 

5 comments:

  1. hey so you moved? good luck there!!


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  2. I love this post!

    I recently tried to reach you via email, but didn't hear back. Knowing how it is with so many emails coming into everyone's Inbox nowadays, I thought that maybe posting a comment would be a quicker and much better way to connect.

    I am working with a very special lady, Dr. Julia Kinder, who has an 8 year old daughter with Down syndrome. We're trying to promote A PETITION REGARDING DOWN SYNDROME and I thought you would be a great resource to help spread the word.

    PETITION - https://www.change.org/petitions/medical-school-faculty-require-complete-education-on-down-syndrome-for-3rd-year-medical-students

    We're also having all sorts of activities on her website Celebrating Down syndrome - http://www.juliakinder.com/DownSyndromeCelebration/

    We also published a national Press Release about this a few weeks ago, but we need the active Down syndrome community to get involved - http://www.prweb.com/releases/Dr-Julia-Kinder/Down-Syndrome-Celebration/prweb10028318.htm

    Please let me know if you would help by posting some of this to your interested audience: colin@juliakinder.com

    Your time and efforts are so important as we try to change the stereotypes surrounding Down syndrome - dispelling the myths - and as we try to CHANGE THE WAY IN WHICH THE MEDICAL COMMUNITY PROVIDES RESOURCES TO NEW PARENTS. We can only achieve these goals with your help!

    Thank you so much!

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  3. *snort* I see Colin got you too.

    Regardless, this IS a fabulous post and you and your family are very special, at least to me. Enjoy life... that's what it's here for. Xox

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  4. In medschool, I got a different view of DS, here I got a different view in human perspective and anyday your version is better, handsdown. Its true they are no less different from any of us, I once read about an actress with DS describe it as 'Up' syndrome. I myself am a schizophrenic and anorexic and face people everyday that I have stopped going outside and speaking with people. I am applying for my masters abroad and most probably will move just to be away from all the people who keep staring at me. your blog provides me respite from this world.

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The Viking came home from a business trip packing a pink castle, a whole heap of princess and prince dollies and a carriage pulled by a unicorn. Life's good until someone swallows a crown or a glass slipper. I won't ever answer your comment, but I'll sure appreciate it while I'm sifting through shit looking for that crown. Yah.