Thursday, August 30, 2012

Good Stereotypes are Still Stereotypes

It doesn't sit easy with me how little we hear from those with older kids with Down syndrome. There are a few, but not nearly as many speaking out as those with children 6 and under, or even 2 and under. It raises my alarm that things are hard in the later years- things that most people just don't want to talk or write about. Sad things. I know a lot of why newer moms are blogging/advocating just has to do with the times... it is kind of the it thing to do, a bandwagon per say (heck yes I jumped on it), to blog if you have a child with Down syndrome in this day and age. Its' biggest lure is the healing that writing brings. I recently experienced the closure age 2 brings of the diagnosis pain, but really, the hardest things to come are what happens from here on out.

I have a friend who is older then me. Actually, she is my moms age. I have found her friendship to be something that I crave, not only because she is a sweet, kind hearted person, but because she knows someone who is 29 and has Down syndrome. Her best friends daughter. And she has been close with this girl from a very young age.

I hear the stereotype all the time that people with Down syndrome are happy. And I always note that it is a stereotype. Like all stereotypes, they come from a source of truth, but at best are just generalizations. Brian Skotko, leading voice of research for the Down syndrome community, did a study a year or so ago showing statistics that 99% of people with Down syndrome love themselves and their lives. I mention that study a lot because it provides information on things I cannot yet answer from a personal experience with Fiona- she simply is too young to communicate if she loves her life or embraces that she was made different with an extra 21st chromosome. And while we are trying to break down old stereotypes of Down syndrome, you know, the negative ones, new ones are rising. Things like all people with Down syndrome love their lives. This 29 year old, she does not.

She hates Down syndrome. Actually, if you say Down syndrome around her, it infuriates her. She prefers it to be referred to as Up syndrome. She does not like that she looks different. She does not want to associate with other people with Up syndrome because it reminds her of herself. She so badly wants a boyfriend, but does not want him to be someone with Up syndrome. I know without a doubt that if she was asked if they could remove her extra chromosome, she would say yes. It breaks my heart.

I am dying to hang out with this girl. Because that is something else that is really hard for me to hear. Although everybody "loves" her and speaks highly of her, she does not have very many friends out side of her family. See, I have never really feared Fiona being ridiculed or bullied or people not liking her- talk to anyone who knows someone with Down syndrome- they always say how much they LOVE them, how they are so nice, so happy, so caring, so helpful. But do they include them? Do they invite them to girls night, or sit with them at the football games, or do a spa day with them? Maybe, maybe a little bit in the school years, but what about college? What about in their twenties, or thirties? Some of the fact why this girl doesn't have a whole lot of friends is because she shys away from the special needs community and activities- but why should only those with learning handicaps or almond eyes hang out with her? How guilty of this am I myself! No wonder she doesn't feel confident or embrace her beauty in her Down syndrome features- she feels excluded because of them.

I have had my moments of wanting to keeping Fiona around completely "normal" kids. Of wondering if doing Down syndrome play groups or special needs preschool is a good idea. Above all else, I want Fiona to be treated as a normal child is, and for her to feel "normal" or accepted and included with everyone. But I am also seeing a great importance of making sure she grows to fully embrace every aspect of who she is. Down syndrome included.

But when it comes to how people will befriend her... that is completely out of my hands. And that is scary. Really scary. I don't want Fiona to ever feel like this girl. To feel ashamed or hatred towards the way she was created. I want for not only people to like her, but to include her. One older mom, of a daughter with Ds who is in her 30s, on one of the Down syndrome organizations I am involved with said "Its after the IEPs that things get really hard.".This is why I crave to hear from older generations. I don't think us moms of toddlers make a full impact with our advocating about Down syndrome because we don't know. We are just repeating stereotypes, good ones, but stereotypes non-the-less when it comes to the later years. Because when a parent is faced with making a choice of life or aborting... its not the baby years they are fearing... its the adult. I can tell you that I love my daughter. I can tell you that it truly does not bother me that she is delayed at this point. I can tell you that I think she is beautiful. And I can also tell you that once you allow yourself to meet your little and fall in love, no problem complication or delay will break that love. But I do not doubt life gets harder in the up coming years... greatly due to others ignorance, cruelty, and low expectations. Life with a daughter with Down syndrome can be wonderful. It is, right now, at 2. And if it does get harder, that still doesn't change my love for Fiona nor will it make me regret her life. I guess I am just saying, I am being more careful with generalizations. And I am going to try to make a new friend. The best way to get what I want for Fiona is to lead by example. And hopefully help this girl see the beauty in Down syndrome, the beauty in herself.

I keep meaning to share this here, but for those who have not seen IDSC(International Down Syndrome Coalition) for Lifes photo campaign, well first of all, you have to google it/them and see all these amazing photos they have been sharing, highlighting the value of life of those with Down syndrome. I love love love this organization who is actually not a pro-life group, just pro-accurate information. They are ones that are trying to help break stereotypes from all sides so that when a mother is faced with the unfortunate problem of being asked whether or not they want to continue a Down syndrome pregnancy, they will at least know the positive, beauty and blessings that come with the extra chromosome, not just the out dated doom and gloom view point most doctors give.

But more importantly, I have been helping IMDSA (International Mosaic Down Syndrome Association) launch their own photo campaign regarding awareness about the rare forms of mosaic and translocation mosaic Down syndrome. Such little is known about these conditions, Fiona has mosaic Down syndrome, and so few in the medical and therapy worlds have heard of them, they can go undiagnosed or under treated. I love being a part of both of these organizations and am having so much fun with IMDSAs photos. We launched it on Fiona's birthday two weeks ago, with Fiona's picture.

Since then we have also released photos of Treston, Emma and Grace, and Natalia. 

Please check out both of these groups on Facebook at  International Mosaic Down Syndrome Association and IDSC for Life. You won't be able to share these photos from my blog because I have photo protection up for my family photos, but please share them from the Facebook pages. The more that are exposed to these photo campaigns the more education and awareness will be achieved. 

Wednesday, August 22, 2012

Onto the next stage

There is something about the age of 2. It came with a sense of calmness I can only compare to the still after a storm. And all that I can feel is gratefulness and serene happiness.

I've watched other fellow down syndrome bloggers go through, what I call, the road to acceptance. A similar journey we all seem to go on. 2 is the age when everything becomes good. Not good because we are talking our way through it and hoping for the best, but good as in we truly would not life to be any other way. The last two years, plus however many months I knew Fiona's diagnosis prenatally, were filled with fear, hope, doubt, strength, anger and happiness. I was like an emotional teenager, giving in to whatever feeling rose up in the moment. And just like a teenager, I acted like I knew it all. But, really, I was still just learning. And now it seems that I have graduated on, confidant in what I know but wiser to know there is still a lot more to learn.

Fiona is my professor. Teaching me more about life, God and acceptance then any classroom ever has. I held her close tonight and told her without a smidgen of doubt that I couldn't have asked God for a better baby. My blogger friend Michelle recently wrote a great post about the two extreme outlooks on Down syndrome. From the medical, science and well-to-do world we get a voice of doom and gloom about Down syndrome, while from families with a loved one with an extra 21st chromosome we hear more of a rainbows and unicorns view. This is no facade or lie. Nothing I say is sugar coated or tied with a bow for a better apparance. And now with full honesty I can say I love Down syndrome, I would not want to remove it from my daughter if I could, and she is perfectly made with her mosaic cells of trisomy 21 and normal 46.

Shes walking now. I am still hesitant to call her a Walker, because there is still a lot of the Fiona crawl going on, but my tiny just-over-2-feet-tall princess can walk across a room. Regularly. She is signing. She listens when I tell her "no" or "stop" or "put your hands down" or the most frequently yelled "SIT DOWN!", and she obeys. She plays pretend, loves to brush her dolls hair and attempt to put everyone's shoes on, big or small. She dances her heart out to every beat she hears. She adores babies and dogs, and insists on kissing them both. She barks every time we enter a house, looking and hoping that there will be a dog there. She is talking- quite a big list of words she has- and she whispers them all.  She lights up when she hears her brothers voices and disparately yells for them. She starts calling for Dada the second we turn into his work parking lot. She loves to climb on my back like she is riding a horse, or rest her head on my belly when I am laying down. She uses her whole body to say no, one tiny flailing hysterical mess. She loves meat and hates vegetables ( 100% opposite from her brothers). She likes to do things by herself, even when its something she isn't capable of doing. She tries, and then tries again. Peek-a-boo is a sure thing to make her laugh, so we play that A LOT. She is a climber, and lucky for her she still easily fits into baby things like infant car seats, swings, and bouncy seats so she takes over them whenever we are around babies. Come to think of it, height and weight wise, she probably still qualifies to use an infant car seat. She is amazing. Vibrant. Loving. Sassy. Smart. Kind-hearted. Gentle. Determined. Inspiring. Perfect.

photography by Sean Ocean

Happy Birthday, our fighter. We have been through more with you in your 2 short years then we ever would have imagined, and are excited to keep riding this roller coaster of a ride with you for many more years to come. The lows may be low, but those highs? There is nothing higher. Keep rocking your one precious life, Fiona Hope.

Lend me your eyes, I'll change what you see.

Sunday, August 5, 2012

The heart of US Eugenics

Its becoming more and more clear to me that there is an unspoken agenda when it comes to eugenics. I do not think it is about a perfect society, as the word by definition implies. I do not think it is about preventing pain or sorrow ( whether its liked to be admitted or not, that is unpreventable whether you "fix" the problem before or after birth). What it boils down to is... money.

All sorts of uncomfortable, painful, and angry feelings rise up in me when I think about this issue. It really has no argument against it. My child WILL cost more money to keep alive then the average born human, both out of my pocket and out of our tax payers pockets. When I hear doctors and government officials and educated people handing out reasons for abortion after a prenatal diagnosis for Down syndrome who try to convince people that this child will be a burden on a family, I see the bull written all over their face. I know they are smart enough to have seen the statistics... statistics such as couples with a child with Down syndrome have a lower divorce rate then the national average, that people with Down syndrome love their lives, that siblings claim to be better people because of their sibling with Ds, that people with Ds live long lives, that many people with Ds graduate from high school, attend college course, have fulfilling jobs and are contributing members to society ( too many links to prove this then I could possibly account for). No, when they say burden, its dollar signs they are seeing. Even the healthiest of healthy children with Down syndrome require higher medical care just to make sure they are healthy. The therapy, the special classes and tutors and helpers the schools put in place. That's what they are talking about when they say burden... except they coat it with how bad life will be for you, you unlucky parent who is going to have an awesome kid you love more then your own life.

But how can I expect our government, which has no moral bone in its body ( don't let them fool you, its all a show for power and money) do anything for the good of human kind? Eugenics is a slippery slope, but I do not think we will ever let it get to the point of getting rid of people who are already "living" by the definition of our government. Remember, they like to be perceived as moral. No Spartianistic future here if we continue to act like a moral country. But as long as we can falsely make a fetus' life not real life, morally, we feel we are justified. And we are told we are justified because this fetus, if we let it live, it will have a miserable, pathetic life as well as you and your family. The reality is that with time and money, that fetus can live a long, healthy, fulfilling life. It all boils down to the money.

I do strongly feel that if we keep pushing for genetic testing, and if we keep believing that a fetus is not real life, that that slippery slope will get steeper. As of right now, there is a bill trying, but failing, to be passed to outlaw gender-selection abortion. As in terminating the pregnancy because you wanted a boy but got a girl. This is not just happening in China, its happening right here. Right now we are pretty limited to what we can find out prenatally about a baby. Sex, chromosomal syndromes, genetic disorders, physical deformities are some of them. Eugenics is being used in all of these areas. But what happens when technology, surely, advances? What if we can determine other things about their physical appearance such as eye and hair color, or height? What if we can determine later in life diseases such as Alzheimer's, clinical depression, Diabetes. What if we can determine the probability of having obesity issues or a higher risk for cancer? Now we are into probabilities.... terminating life on a chance. What I want to be understood, is ALL life is a chance. Even if we can test for every health or mental related issue prenatally, life throws curve ball after curve ball. Playing God, whether you believe in Him or not- the expression simply meaning trying to control life, is impossible. If you get rid of one "problem", another will takes its place. Whats that called, evolution? And whether your faith is in God or your belief is in evolution, babies that are not healthy enough for life take care of themselves through miscarriage. There is a high rate of miscarriage with babies with Down syndrome and other birth abnormalities... they die because they truly were not compatible with life. We terminate because we proclaim they are not worthy of life. Why do we feel empowered to proclaim this?

It's always interested me in, for a large majority, how different people are that are born disabled and those that become disabled during their out-of-utero life. For the majority, those that are born into this world with a disadvantage come out swinging. They take their one precious life by the horns and ride it with all they got. They tend to be positive people, content, and a pleasure to be around. They notice their differences, and at times struggle with them, but on the most part they just live and enjoy what they can do.  On the other hand, the majority of people I know when they become disabled through an illness or an unfortunate accident, really struggle keeping their head above water. Life is now unfair, they lost their drive, they tend to be more negative and to not be this way takes a lot of fighting and counseling. Life is now harder for them, their personal dreams have been lost or pushed farther away, and they have a before and after comparison. I think this is important to remember when you are given a prenatal diagnosis. WE may think our child's life is going to be bad, because WE have experienced life differently. But we tend to forget that different life is going to be the only life our child knows. To say we are saving our child from a pain we have never experienced to know for sure if it truly is painful by means of then to prevent their life, its not only hypocritical, but plain ignorant. Our children are not supposed to carry our wishes, our dreams, our hopes, but rather they are individual minds with their own aspirations. Our issue of acceptance has to start with an open heart. Letting our children define themselves, and not a text book.

You may give them your love but not your thoughts, for they have their own thoughts. You may house their bodies but not their souls, for their souls dwell in the house of tomorrow, which you cannot visit, not even in your dreams.
Kahlil Gibran
I do not think our government will ever be on the moral side of this argument. No, instead of cutting back on our prison systems, which are billion dollar industries, it is easier to just keep convincing parents that their unborn baby will be nothing but heartache once born. (They seem to forget that heartache involved with finding out your disparately wanted baby has a health issue, or the heartache involved with having to make a decision with that disparately wanted baby's life). If its money you want to talk about, I can tell you lots of things that our government blows money on over the life of a human being. Even with things like the state of Massachusetts passing a law saying that accurate and up to date information has to be presented at a prenatal diagnosis, I would be hard pressed to believe doctors and those who give the news do not emphasize the negative. But I do have faith that our country, at least for a while longer, will be a free-choice country. Meaning, I may not be able to tell you that you can't have an abortion, but you also can't tell me that I have to have one. And as long as we have that choice, then I will help spread awareness and speak up for the amazing lives those with Down syndrome have. Because I count it a blessing if just one family welcomes a baby and gets to experience the joy I have with my Fiona. 

This is not meant to start a Pro-life/Pro-choice debate, not attacking either side, nor do any of the generalizations meant to imply that everyone born disabled rocks their life and everyone who becomes disabled doesn't. That was simply my personal experience with those that I know. Any other point of discussion is welcome below.

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