Monday, June 4, 2012

Until you find a chromosome for assholes , leave my child and those like him alone .

You know, everyone gets to be frustrated by something ... and speak out on it if they want. However when you start talking about not using the word "retard " or describing something as "retarded", folks start waving the " I am not PC " banner . Well that's fine neither am I ... SO HERE WE GO!

The prenatal debate is not about abortion rights. YEP, I said it. So don't go there with me. Prenatal testing is seen by the medical community, as well as expecting families, as the ability to gather information about your child. While not all doctors are guilty of this, there are still no shortages of anecdotes about the extremely negative information one is given whenever one tests positive for the possibility of their child having a diagnosis of Trisomy 21 (Down syndrome). Other chromosome abnormalities and genetic disorders can also be detected (i.e. Cystic Fibrosis, Spina Bifida, etc.). Now should parents have this knowledge and the information that comes along with it? YES. The reason the book, "What to Expect when you’re Expecting” is the go to handbook for pregnant women,is because we are looking for information. But could you imagine if that information read something like this "These children have heart issues, hearing issues, vision issues, are mentally retarded and don't have a long life span"...and then you look up from the book and someone was standing there and said "So , what are you going to do?" I'm sorry, but I cannot say for certain what I would have done. The fact remains that I was 24 years old, all my prenatal testing came back normal and I didn't receive the diagnosis of Trisomy 21 for my son until I was in bed in the hospital post natal , while getting a blood transfusion while hearing this exact list. And I had not held my child for more than 10 mins. was also asked what am I going to do ? *screwface *

Why would people tell us such a negative things, only. The reason there are so many YouTube videos with really nice songs playing behind beautiful children with trisomy 21 is because the parents are screaming to a world that sees their children as a laundry list of the worst things ever, that HEY , my child is ok -- Look they are beautiful, smart, kind, funny , sweet stubborn ... JUST LIKE YOUR CHILDREN . Don’t get me started on why it's the end of world when someone says one has a disability , but we live in a world where abnormal doesn’t just mean not normal , but it means "less than" normal, which is a whole other' thing. I digress. But the point is when parents only get this side of the story, you wonder if there is an effort to make sure children with these differences are no longer born. Please don’t look in horror, we are the country who had a very profound eugenics programs in the early 1900’s. We still do unethical medical testing and in the '80's if you don't know the story of Baby Doe, please read it. When it comes to people with disabilities, the ethics of the medical community and governmental agencies, leaves much to be desired.

But back to the rest of my post.
Here is the thing. Just because you know my son will have an extra 21rst chromosome, and everything on that list may or may not apply ... is his life any less valuable, then those who will not have those issues. What is the difference between his outcomes and the outcome of a child who is considered typically developing? We just started educating children with disabilities, a little  over 35 freaking years ago. People were locked away in institutions, some still are. When we closed institutions in certain states, we did not fund the supports necessary for them to live in the community ... If your child does not have a disability; tell me did they need your support in school. Did they need help with their homework? Did they look to have friends, and felt isolated when they didn’t? Was their goal always college? Are they still living with you? What would they do, if you weren't here tomorrow? All of these questions and more are relevant to all children and speaks to the fact that we live in communities in which we need to support each other.

Please understand, that I am not saying having a child with a disability is easy. I don't think raising children is an easy task. And I should probably let you know right now, I am not going to give you, "I mourn the loss of a perfect child" because I don't believe in perfection. I do recognize this sentiment however and understand every family has their own journey. No judgement here.

I do know this though. I know that there are a lot of people who are in the world today, who are real assholes, mean spirited, jaded individuals, who I would never put on a they don't deserve to live list... but some would say the world would be a better place without them (My social worker spirit makes it hard for me to say this because I DO believe everyone has a story and has value.) But apparently they didn’t link asshole with a specific chromosome, when they mapped out the human genome. So we just have to deal with them. But because, you can find my son's difference, his triplicated chromosome ... do not assume you know his story. A diagnosis gives you some information, but it doesn’t give you all the information. I never knew love like the love my son gives me. I am thankful to him for showing me. I didn't know I was capable of loving someone the way that I love him. I am no saint , and he is no angel. But we do thank god for each other and his dad - can't leave out the other super important person in this trifecta of awesomeness.

But I guess we have to start valuing the people with disabilities who are here ,first, before we can really tackle that issue at hand. In the meantime, kudos to all the parents, national groups, and doctors who take the time out to give expecting parents the information they need to make an informed choice. A truly informed choice.
videoSo, until then …leave our children alone.

* See folks , everything is not hunky dory , but if you choose to have a child with Trisomy 21 (Down syndrome) , with love and support in many different ways , it is ok .  That kiss, that smile , hearing him say his name ..makes everything worth it *  !


3 comments:

  1. Oh my goodness, very well said! I have a 16 year old daughter with DS who is living and thriving and enjoying life more than most of the a'holes that you refer to. Love the post!

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    1. absolutely ! thank you. and isnt that what everyone wants for their child :) ! I can and can't wait till my son turns 16 . LOL !

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  2. Well said. My son will be 29 this year and his siblings will be 32, 31 and 26. What have our years been filled with; LOVE, tears of joy and sorrow, tons of laughter, words of anger, misunderstanding and frustration, numerous failures, a gazillion successes, LOVE, excitement, frustration, exploration, angst, LOVE, determination and passion. Oh, don't let me forget the LOVE!I hope to be blessed with many more years.

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