Sunday, October 17, 2010

Down Syndrome Awareness Month: Siblings

Down syndrome n. congenital disease marked by mental deficiency

Really, Webster? A disease? Come on, seriously? My brother is not diseased. He's a healthy kid who happens to have Down syndrome. He walks and gives hugs and knows his own bedtime routine. Which is more than we can say for you, Webster. All you do is give misleading definitions. Ha.

My brother's name is Finn, and I love him to death. He has blond hair, blue eyes, a great smile, and likes to dance to the Rolling Stones. And if you look closely, yes, he has Down syndrome. So . . . what's the big deal? One extra chromosome in each cell, right? I mean, the more, the merrier! But sadly, lots of people don't seem to agree with me. Why? Is it the eyes? Do you not like the way they slant? Sorry, can't help you with that one. Could it be the way his tongue sometimes sticks out? Well, I'm sure that at some point in your life you did the same thing. No? Oh, I got it this time. It's because he's different. Well, here's a newsflash - we're all different anyway!!!

I love having Finn for a brother. Having him in my life has taught me so much. I've learned lessons so much more important than whatever I've learned in math or language arts (sorry, guys). Lessons about respect and equality. In all the ways that count, however small, Finn has made the world a better place. At least my world. If not for him, I:

- would not have made a speech in front of my school about the r-word
- would never have understood disabilities
- would have had less respect for those with disabilities
- would not have a problem with the r-word

And if not for the speech I gave at school, I would not have taught others about the r-word, and that's only, what, a couple hundred people unaware of the discrimination? Unfortunately, some were left unaffected, though, because the word "retard" is still thrown around at my school (sometimes)! I mean, man. Some people just don't get it! But some people do.

Well, that's it. I love Finn, and he's one of the biggest parts of my life. After you get past the whole Down syndrome thing, he's just a human being. Just like me. Just like you.


As you can see, Kevin is very protective of his brother. The oldest of our kids, Kevin definitely has a better grasp than the other kids do of what Down syndrome is, what its implications are, and he is more aware of the ways in which Finn is different - different from the siblings that came before him, and different from other kids his age.

Our other kids don't really have a deep understanding of what Down syndrome is. Joey (age 8) and the twins, Annabelle and Daisy (age 6) know that Finn has something called Down syndrome, and we've told them in the simplest terms, appropriate for their ages and level of understanding, that there are a lot of people who have Down syndrome, that they're all different, and that, as far as we can tell right now, what it means for Finn is that maybe he looks a little different, and it takes him a little longer to learn how to do stuff. They're cool with it. Really, it's just so abstract to the younger kids at this point. Lilah (age 4) - who is very, very attached to Finn - I don't even think she knows that he has something called Down syndrome. She wasn't even two yet when he was born, and it seemed pointless to try to explain it to her back then, and it hasn't come up for her yet.

All the kids really adore Finn. They dote on him. I don't want to say, though, that they adore him any more than they've adored or doted on any of the other babies that have come into our family; I don't believe they love him any more or differently because he has Down syndrome. It's just that, yeah, he's kind of staying a baby for a little longer, so he's enjoying the kind of attention from his siblings that they've showered on each baby, just longer.

I think one of the prevailing misconceptions out there in the general public is that having a child with Down syndrome will negatively impact the other children in the family. It's just not true. My kids don't see Finn as a drag. Finn definitely has the role of The Baby in the family, but he fits right in. They shower him with affection, they include him in their play, and yes, sometimes they get mad at him if he gets into something of theirs. I think the biggest negative impact I've seen on my other kids is Finn's therapy and how intrusive that can be on our routine and family time - but I'm not a big proponent of early intervention, so that is most likely my own feelings that don't even register with the kids. The fact that Finn has Down syndrome does not in any way affect the things we do as a family, or the other kids' ability to do the things they want to do. We do the things most other families do: we go to the park, we go for walks, we go out to dinner, we go shopping, we play games, we have picnics, we have dance parties in the living room. We took a family vacation this past summer. The kids play Little League, they are enrolled in music lessons and dance classes. Having Finn hasn't taken away from any of that.

One day, a long time from now, it's true that Finn's siblings might be required to step up and take on some role of responsibility for Finn. I guess that can be looked at as a possible burden. I'd like to think, though, that my kids will have compassion so ingrained in them that they won't see it as a burden. It would be nice to think that in any family, even so-called typical families, the kids grow up to be loving, compassionate adults who would help their siblings out if the need arose. Because the fact of the matter is, even families without Down syndrome have trials and hardships. Shit happens. And none of knows what tomorrow will bring.

I don't believe that Finn landed in our family at the hands of some divine force for the purpose of teaching us anything. But I do believe that as a natural consequence of having Finn in our family, each of us in our family is learning some very valuable life lessons - and the kids, who are naturally so much more open to these lessons, are soaking it up. Compassion, tolerance, and kindness to all people. My kids are growing up knowing that different isn't a big deal, and that we're all different in our own way anyway. They are growing up with an absence of prejudice, and absence of fear of those who are different from them. They are growing up with the belief that everyone deserves kindness and respect, and that the world has room for everyone, no matter what their abilities, skin color, or beliefs are. They are growing up knowing that they are no better or worse than anyone else. They are learning about devotion to those they love. They already understand that every human being has value.

1 comment:

Jen said...

I loved this post! Made me teary-eyed (in a good way). My 18 mo daughter has Ds, and she is our first and possibly only (biological) child due to fertility issues. I try to avoid thinking too far down the road, but I enjoyed reading your perspective and that of your oldest.