Thursday, June 14, 2012

Breaking Stereotypes

I relate to life being a wave. Swells, highs, lows, calm.... those words speak to me. I ride many different waves. I have my parenting stress wave, my marriage wave, my health wave, and many many more. But right now its my Down syndrome wave that has taken center stage.

I am thinking about it a lot. Which this particular wave always is brought on by reading too many articles. Because although I have a little girl with Down syndrome, she rarely is the one who spurs my thoughts about it. Actually, she never makes me think of it when we are in the comfort of our home. Its only brought to my mind sometimes when we are with out friends, and a little bit more when we are with new people, and only because it is bound to get brought up in conversation when getting to know people, whether I avoid it or not.

I have never dealt with the cruelty face to face in person that I often read about. The cowards that anonymously send comments about how someone like me is a "horrible selfish person for knowingly giving birth to a defective person." Or the stinging jabs that Fiona is a burden to society, a waste of air, a retard. No one has EVER said this to my face. And everyone who knows us and Fiona loves her. Craves her. She is a super star at our church nursery, and my friends joke that they feel so special when Fiona chooses them to hold her.


Intentional cruelty is not often come upon in my circle. If anyone I have met feels negatively towards Fiona, Ds and my decision to continue her pregnancy, they have kept it to themselves. But daily, I do deal with the cruelty of ignorance.

From the sigh to the attempts to give me the "but at least", which all consist of stereotypes. "But at least she is happy", "But at least she is loving", "But at least she will never understand what is said about her" (REALLY?!!!) "But at least she is mild". These are really the hardest moments for me. Because if you were truly mean and evil, I could put you in your place. I could tell you how wrong you are, with research to back it. But you are sincerely being nice. You are trying to be helpful or encouraging, and trying to show me that you think my child is wonderful in your own misinformed way. But all you are doing is stereotyping my daughter. And showing me yet again, how much the world does not know about those with Down syndrome.

The most hurtful and ignorant stereotype is that people with Ds are too stupid to understand. Ya, I thought we were at least aware this is false by now. Many many people with Down syndrome attend school, graduate, and continue on to college. Some even graduate from college. A lower IQ does not equal bumbling idiot. So most things you say or do in front of someone with Down syndrome, they will pick up on.  And while we are on that, very few people with Down syndrome would be considered anything but mild. Usually a person who has Down syndrome and is severely handicapped has a duel diagnosis. Meaning, that they not only have Down syndrome, but also have Autism, or CP, etc ( And not to say that those who have a duel diagnosis are any less awesome either. I have met some pretty amazing, hard working individuals who are whats considered more severely handicapped). In years past, we did not know how to tap into the mind of someone with Down syndrome. Its actually pretty simple- love them. With today's knowledge of how to help those with the extra 21st chromosome, we are seeing more and more accomplish things that were once thought impossible. Do not limit my daughters potential and intelligence by demeaning her in such an ignorant way.

And then there is the happy stereotype. This one is very touchy. Because Fiona is a very happy baby. But its the fact that you are saying that's the Down syndrome in her. That she is "such a happy person" is the truth, but to say she is "such a happy person" simply because people with Down syndrome are "happy people" is a stereotype. I want to make it very clear that people with Down syndrome are not always happy. Fiona cries, a lot. She gets frustrated and mad and yells. She hits her brothers, she snatches toys out of their hands, she pushes my hands away when she does not want something.. She is not too stupid to understand when someone has been mean to her, and she responds appropriately as I have seen her express every human emotion possible.  She can be content, but also can be ornery. To every stereotype there is some truth. Yes, in general, people with Down syndrome are more often then not, happy. But to imply that they are incapable of being anything else because of their mental condition is dehumanizing.

So when you, friend or stranger, say these things to me, I bite my tongue and smile. Because the last thing I want to do is make you feel bad when you were in your heart being kind. And then I go home and struggle with whats better, silence or education. If I never tell you, you'll never know to be any different. Those stereotypes will remain in your head.

I am not a big TV watcher. I loathe "reality" tv- its garbage to me. Every once in a while I will randomly watch a drama or sitcom and get sucked into the plot for a season or two. Mostly, I like my Friends reruns. But there is one show that I love. And not so much because of the show itself, but what the show is doing.

Glee.

Its breaking down stereotypes.Particularly disability- or ability stereotypes.

They portray Becky Jackson like a normal teenager, which she is. She also has Down syndrome, but they do not emphasize that. They show the different things that a teenager in a public school with Down syndrome may encounter, but yet also show how for the majority of the time her having Down syndrome doesn't make any difference. They give her character sass, and she has even gotten some criticism that she is too mean.... something that people don't often associate with someone with Down syndrome. My friend Holly dealt with this not to long ago.... her daughter Brooke was being the playground bully and another mom came up and asked Holly hesitantly if Brooke had Down syndrome. This lady was shocked how "mean" Brook was being (which FYI miss Brooke is 2 and was playing like a typical selfish 2 year old) and didn't understand how someone with Down syndrome could be so "mean". As my friend was walking away she could hear them saying "I bet she lied and she doesn't even have Down syndrome". Read Holly's Blog  for the details. This stereotype was so deeply rooted in this woman's head she could not see a person with Down syndrome acting, well, like a person. ( And another FYI, Fiona bullies Brook... that's right, TWO girls with Down syndrome being mean to each other... mind blowing).

 
Holly, how do I not have any pictures of Brook and Fi together? I must actually spend time with you when we hang out :)

I am not offended if you notice that Fiona is a happy kid. What is offensive is when you assume she is a happy person because she has Down syndrome, or credit her easy-going personality not to Fiona but to Down syndrome. As one mom put it, "I hope my kid would be happy and loving regardless if they have Down syndrome or not".  Breaking these stereotypes is important because they devalue someone with Down syndrome. And when it comes to a mother having to make a decision whether to continue a pregnancy or not, a stereotype can mean whether a life is lived or not.

Feels good to have that off my chest. Its been weighing pretty heavily on me lately.

Loved this article on Glee.








Monday, June 11, 2012

The Sigh

The sigh. I hate it.

I hate that when I tell you my daughter has Down syndrome, you drop your shoulders, tilt your head and sigh. The look of pity like its something awful, your sad demeanor joined with your depressing "oh" or even worse, "I'm sorry". I hate it.

I have to double my cheerfulness to over ride the mood you just placed on the room. Trying to quickly explain this isn't something to be sad about to someone who is still looking at me like I told them she was only given 6 months to live. Did you not notice how perfectly normal and happy everything was until you got all depressed over the mention of Down syndrome? Did you not notice that huge smile on my daughters face that three seconds ago you were melting over? No, now you are only noticing what she is not doing. How she is tiny and not walking. How she doesn't understand simple directions and only has a few baby words. In a split second, you judge my daughter. You limit her. You stab a knife through everything I live for to make this a better more accepting world for those with special needs. And I hate it.

I can hide from it for now. She is young... I don't have to say she is almost two, I could leave it that she is one and you would never know the difference. Sometimes I wish that I would just lie about her age, so you would continue to smile and dote over my beautiful little girl and not wonder why she does not act or look like a two year old. But that would only solve the problem temporarily. In the not so distant future I won't have to say anything, you will just know. And your smile wont be one of admiration but one of pity. It wont be watching, but staring. Or worse, not even looking at all.  And I hate it.

Please, someone, just get up on the highest mountain and scream for all to hear, "DOWN SYNDROME ISN'T BAD!" Oh, but wait, we do that every day... just they don't really believe us. How can different not be bad? How can medical complications not be bad? How could mental handicaps and physical handicaps not be bad? But see, that's not what we are saying. We are saying DOWN SYNDROME isn't bad. That because my daughter has an extra chromosome therefore does not mean that her life is bad. Certain circumstance in her life are, yes, hard or per say bad. But her life itself is not. Its actually quiet flipping amazing.

But you new friend, acquaintance, stranger, if we can not get that through the general populations minds with thousands of hours of research and advocating, how am I going to explain that to your eyes of pity in the few minutes we come across each other. I've gotten pretty darn good at quickly kicking Sadness's butt out of the room, but then I am left there with Ignorance. I try to brush off the sting of pity with a quick, "No, life is wonderful" but then the awkwardness leaves no time to really explain it. You leave still feeling sorry for me and my daughter and I leave pissed off that the world truly views my life from the outside as pitiful. And I hate it.

The sigh. It gives all your thoughts away. You do it subconsciously, almost involuntarily, it just comes out. And there is no taking it back. You know what my involuntary thing is when I see someone different? A smile. Not because I am better then you, but because I know. I know that the precious life, that has seen more and been through more then you want to imagine, is beautiful. I know that that precious life has the same basic need that every human being has- to be accepted and loved. I know that their day was probably going pretty damn fantastically until you pitied them and they remembered the world sees them as pitiful. I know how good it feels to be smiled at with understanding and admiration, not sympathetic, eyes.

The sigh. I hate it.

A smile, that makes my day.




Oh, and hello again Blog. I told you it was not a good bye. Not sure when our next encounter will be, but until then, see you later.

Monday, June 4, 2012

This isn't good-bye, just see you later

Dear Blog-

Its been a while. 17 days to be exact. I've tried to write a few times, but the words, they just wouldn't come. Our relationship has changed over time. And I am not saying we still can't be friends, but I just don't need you like I used to.

This is a place of healing for me. The whole blogging world is. Starting with a little place called Enjoying All the Small Things all the way to my own little corner with you. Its taken almost two years, but I am starting to feel whole again.

See, the gratification and encouragement I got from sharing my heart and receiving love via comments from both friends and strangers was my Prozac. Sitting down to a white page and a blinking curser and writing sometimes for hours on end was my therapist. As I wrote the words, I spoke to myself. I saw my life- and I saw how I want to perceive my life. The things I liked, the things I didn't and how I could be the wife/mom/daughter I want to be. My days were easier to handle knowing I had this escape. Knowing at the end of the day, I would sift through countless pictures and thoughts and see how lucky I am. I grew with you, Blog. You held me together when I could so have easily fallen apart.

And then there is the whole special need's blogging community. I have made friends from next door to across the globe who every day help me navigate through these waters. Open my eyes to things, stand next to me to fight for rights and fight against ignorance. I never would have met them without you.

I've heard 2 is a turning point.  The magic number for the heart to heal from the initial shock. Every ounce of strength I have had has come from my God. There is nothing I can take credit for. But as I have been leaning on Him just to stand, I can now feel Him underneath me pushing me along. Still guiding me, but letting me know my baby legs are strong enough with Him as my base. Which has also led me to lose the need to pour my heart here. I have Him to listen to me, and I now fully feel that is enough.

I've held on to excuses to keep this relationship going far longer then it should have. That its the most convenient place to journal/scrapbook. That people like to read it. Or most conceitedly, that people need to read it. But I leave rest assured that I can stop as there are many people out there blogging my thoughts, hopes and dreams. And as far as scrap booking, well without you blog, now I will have the time to do it. And its not like I am taking you down, my messages are out there, help for parents going through those dark, unknown days of diagnosis's, hospitalizations and surgeries.

Thank you for everything. You helped me make this a better life for Fiona. She will benefit from the blogging being done about Down syndrome and Mosaic Down syndrome awareness, and for that I am forever grateful. And double cheers if it helps more parents realize the precious gift they have been blessed with with that extra 21st chromosome. Keep up the good work  Kelle, Holly, Deanna, Patti and all the other amazing Ds bloggers you can find on my side bar.

With Love,
Shannon
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