This is My Soapbox

I have been wanting to address the topic of advocacy since the beginning of the month when I was brainstorming what I wanted to include in the blog this year, but it has taken me 18 days to get my brain wrapped around what I want to say on the topic and perhaps even to make up my mind on some aspects.  This is an area in which I find it particularly hard to achieve balance.  On one hand, I often feel like I talk too much about Down syndrome, make it too central a focus of our lives and rush to introduce it when discussing Linc.  I know, in my heart, that Linc is a child first and not a diagnosis, but sometimes I think that offering the information of Lincoln’s diagnosis early on prevents people from being distracted or ill at ease, wondering about his characteristic features or small size or delayed speech, and also shows people that we are not ashamed of who he is.  I like to sort of get it all out on the table and hopefully bypass any awkwardness by saying, “Yes, he does have Down syndrome and no, we aren’t sorry, and you shouldn’t be either.”

Then, on the other hand, sometimes I hear how often it becomes a topic of conversation and inwardly cringe.  I don’t want to be the lady who is always talking about Down syndrome.  That doesn’t project the message of acceptance and pride for who Linc is.  That projects a sense of preoccupation with the thing that makes him different.

But when I visit the other 31 for 21 blogs and read the messages from the local DS group and the online community, I can’t help but feel like I am not saying nearly enough.  These people are posting about ARD meetings, IEP’s and all the other nuts and bolts of special education (Do we even call it that anymore?  This is something I should know!).  They're talking medical details, from heart defects and open heart surgery to reflux and thickening liquids for infant consumption, and court battles being fought and legislation being proposed on the special needs front.  They are comparing geneticists and ENT’s and suggesting courses of treatment for the various medical issues that can accompany DS.  They are detailing battles with schools who are not, in the concerned parents’ minds, doing enough for their children.  They are sharing sometimes heartbreaking stories of special needs children receiving a much higher percentage of discipline and explaining, often citing research and recent news coverage, how using restraints to “calm” children with Autism and Down syndrome is counterproductive and cruel.

And I am talking about Halloween costumes and roasting marshmallows. It doesn’t really seem to stack up, and it can quickly become yet another thing to feel guilty that I am falling behind on.  Sam and I were talking about this recently, trying to form a bit of a cohesive statement of our advocacy intentions.  We decided that although we probably should throw ourselves more wholeheartedly into educating ourselves and speaking out about Down syndrome, we would rather err on this side of the advocacy spectrum.  Like I said before, we have intentionally opted to focus on Lincoln’s life and not his diagnosis, and here’s why.

Current research shows that 90% of people who receive a prenatal diagnosis of Down syndrome will terminate the pregnancy.  When I heard that statistic the first time, I was devastated.  I thought it meant that 90% of people in the world believed that my son didn’t deserve to be born. I pictured a future for Linc without peers, without friends who are drawn together by the shared experience of having 47 chromosomes in a 46 chromosome world.  And worst of all, I pictured heartbroken parents making this horrible decision based on the idea that their lives as parents of a child with Down syndrome would be nothing more than an endless string of ARD meetings and hospital rooms.

For now, I think the best way that I can advocate for Lincoln and others like him is to show that life with Lincoln really is more about Halloween costumes and roasting marshmallows.  I know, and those who have had the pleasure of meeting him know, that Lincoln deserves to be here not simply because of two-dimension platitudes like abortion is bad or God never gives us more than we can handle or raising him is our lot in life and we’d better just grin and bear it.  He deserves to be here because he is a bright, funny person who has a full life and makes the lives of the people around him more full, more saturated with gratitude and joy.

Last night, Lincoln and his brother were playing together out in the yard.  They were playing a make believe game called Secret Spy that consisted of a lot of sneaking around “spying” on people, then a lot of running around screaming when they were “caught” by their imaginary mark.  Together, they would run and hide in their cave (the soccer goal) and laugh at their narrow escape, then sneak out again for another mission.  At one point, Linc came over to me to ask for a drink of water, and Nico begged him to come back, saying, “I don’t want to be a secret spy by myself, Lincoln!  I need you to be my partner!”  I said, “Hang on, he’s just getting a drink of water.”  And Nico replied, “But it’s no fun without him!”

When I was pregnant, extensive prenatal screening was only given to women over 35 or women who had high risk pregnancies.  Now, women of all ages are offered prenatal testing, and since the majority of babies with Down syndrome are born to women under 35, this will translate into more and more prenatal diagnoses.  Unless word gets out that terminating a pregnancy is not the same as medical treatment to address Down syndrome (as it is generally offered to women) and unless people see that raising a child with Down syndrome is not some kind of life sentence for either parent or child, there will only be more and more pregnancies terminated unnecessarily.

This is my soapbox, and I am standing on it proudly.  Without Lincoln, Nico would not have a secret spy ally, a favorite co-conspirator and best friend.  His life would be worse, not better.  I am not here to cast moral judgment on abortion in general or protest prenatal screening.  I am here to say that raising a child like Lincoln is a gift, and one I would gladly wish on someone else.  May you all be blessed with Halloween costumes and roasting marshmallows, with imaginary spy games and sloppy wet goodnight kisses and the world’s biggest and most heartfelt hugs in the morning, as we have been.