Usually when I write about Finn or Down syndrome, I write with the unconscious assumption that most people who will read it are people who have followed my blog for a long time and are familiar with our family and how Down syndrome plays out for us. That last post, though, about the r-word, made it pretty clear that there are people who have only recently stumbled across my blog. The fact that I am still, after all this time, explaining why the r-word is offensive, and actually getting sucked into arguments with commenters about it tells me that some of you are new here. So, I’d like to tell you about Finn and about Down syndrome from this family’s perspective.
When Finn was born and we found out that he has Down syndrome, it was a very sad time for us – mostly for me; Michael took it more in stride than I did, maybe because he had worked in the disability community for years and it therefore didn’t scare him so much, or maybe because he’s just generally more laid back than I am. Anyway, the sadness that cast a pall over our family during that time was undoubtedly compounded by the fact that Finn faced almost immediate surgery and had to spend almost two weeks in the hospital, mostly away from us. It was really, really hard to hand our tiny, helpless newborn over, and then to watch him struggle to recover from surgery, and to not even be able to be with him all the time.
In the beginning, Down syndrome felt like this big, scary thing – I honestly had no idea what it would mean for Finn or for our family, but it all seemed very bleak back then. That bleakness really was chalked up to the big unknown. I’m sure I had some preconceived ideas about Down syndrome, but they were fairly vague, as I had never so much as met a person with Down syndrome before in my life. I have a vague memory from my childhood of being in a restaurant or somewhere with my mother, and her pointing to a person with Down syndrome and saying the person was a “Mongoloid.” Other than that – I had some inkling that they were prone to heart defects, that they were mentally retarded, and beyond that, I really didn’t know. Even “mentally retarded” was really a big mystery to me. What exactly did it mean? My biggest fear was that it meant he might be utterly non-functioning and would never recognize his family or be able to connect with us.
Down syndrome has turned out to look very different from what my worst fears were. Whatever sorrow and fear we had at one time left us a long, long time ago. Finn is a little boy who makes us laugh, who frustrates us, who loves music, and dances with abandon. He can be sweet and charming, and he can be a bratty pain in the ass. Contrary to popular belief, kids with Down syndrome are not happy all the time, or even happier more of the time than typical kids are – at least Finn isn’t. He’s actually a pretty moody kid and is prone to tantrums. He gives excellent hugs and sloppy kisses, but he’s no more loving or affectionate than any of my other kids, so he’s busted down that stereotype as well. Also, he does not have some sixth sense that enables him to tune into other people’s moods and emotions more keenly than any other kid I’ve ever met, so I call bullshit on that myth, too. Is it especially challenging to be his parent? His mood-driven behavior can be challenging to deal with. It is often a challenge to understand what he is saying, because he has poor articulation and enunciation. That’s pretty typical of Down syndrome. I wish he were potty trained, but he is not at this point in time. Mostly my feelings about that have to do with his personal dignity and having non-family adults at school (his aide) having to change him, and therefore have intimate contact with him. I have trouble with that. Changing him myself doesn’t faze me – I’ve been up to my eyeballs in diapers for almost 12 solid years.
Some kids with Down syndrome have very serious health issues, and that can present some big challenges and a lot of stress. That has not been our experience. Finn had one major surgery at birth to correct an intestinal malformation (something actually pretty simple and straightforward, but that forty or so years ago, he would have died from because nobody would have been likely to fix it), he’s had a handful of other minor surgeries and procedures, a few illnesses (although none that have required hospitalization), and that’s it. Overall, he’s a healthy little boy.
The biggest challenge by far pertaining to Finn and Down syndrome is the prejudice, outdated notions, and stereotypes that are prevalent in the world we live in. I cannot stress that enough: the biggest challenge we face, and without a doubt the thing that will cause Finn more suffering in his life than anything else, is prejudice. It comes in many forms: the r-word being thrown around; people defending their right to use the r-word, or arguing that it’s not offensive; pity; well-meaning people believing that he doesn’t belong in a general ed classroom because it takes away from the “regular” kids, or isn’t fair to the teacher, or he can’t keep up anyway, so what’s the point?; adherence to generalizations and stereotypes; a belief that it takes “special” parents to raise a “special” kid (as if he’s harder to love than a typical kid). Some prejudice is subtle, some is blatant. It all hurts. It all makes our life harder and Finn’s life harder.
One of the first questions I often get about Finn is, “Is the Down syndrome severe?” or “Is he high functioning?” Listen, Down syndrome is Down syndrome is Down syndrome. What I mean is, if a person has it, they have it. It’s like pregnancy – it’s all or nothing. There is no such thing as “severe” or “mild” Down syndrome. How it manifests varies from person to person. Are some people with Down syndrome more severely or mildly affected? Yes. Which brings me to the “high-functioning” question. When people ask me this, I answer honestly: “I don’t know. Oh, and also? I don’t give a shit.” Is he high-functioning compared to what? Listen, there are things he can do, and things he can’t do. There are things he will one day be able to do, and other things he will never be able to do. He’s five years old right now; I have no idea what he will be capable of in a year, or five years, or twenty years.
I don’t talk or write much about Finn’s achievements. It’s not because there’s nothing to write or talk about, it’s because I refuse to value him or encourage anyone else to value him based on his abilities or accomplishments, or lack thereof. That’s what I mean when I say that I don’t give a shit if he’s high-functioning or not. It doesn’t matter to me. He’s my kid. I adore him (even if he bugs the shit out of me sometimes), and am fiercely protective of him. I want people to understand that he is a unique, complex human being, and is intrinsically worthy and valuable based solely on that.
I have a lot of trouble with this belief that having a kid with Down syndrome is this big tragedy, or even this sense that I earn extra admiration because I so stoically deal with having a kid with Ds. I am dealing with various challenges with some of my other kids who don’t have Down syndrome or any other disability – things that stress me out and keep awake at night with worry. Being a parent is like that – it really doesn’t matter if you have typical kids or atypical kids. Ruling out Down syndrome may rule out certain risk factors, but risk factors certainly aren’t guarantees or predictions anyway. It may rule out certain realities, but other realities are still there. Life is beautiful and wonderful and gut wrenching and messy – no matter what. Our life would not be any easier without Finn in it, without Down syndrome in it.
Our life really isn’t hard – it’s just life.