31 for 21, Day 24: The News is Good

Welp. Clearly I've failed at ye olde "31 for 21" this year. It was a nice thought, but it was not to be. There was a time when I could blog every day and this is just NOT that time.

But I've enjoyed the abundance of Down syndrome articles friends have shared in the last few weeks (courtesy of Down syndrome Awareness Month). There's so much good information now. So much positivity and hope. So much that wasn't there on that insufferably hot, humid day more than eleven years ago in the delivery room, when a doctor I'd never met gruffly muttered, "Well, we think he has Down syndrome."

This week, some of that good information came in the form of a podcast. I've started listening to them again, after an unintentional hiatus. I used to enjoy them when I was commuting (a hot coffee, a seat by a steamy window, a voice whispering eloquent writing or dialogue into your ear? THE BEST). Now my commute is two minutes long, the time it takes for me to drive home from dropping Ellie at school, walk to the kitchen table and pull out my laptop. So I've had to get a little more creative about finding the time to listen.

But check this one out. Writer and comedian Bethany Van Delft says, of her realization about her early days of having a baby with Down syndrome:

"Once I stopped fearing...I realized all moms cry a lot. All moms doubt their ability to raise this child. All moms worry about the future. I used to wish I could go back in time and get that test after all, but now I wish I could could go back in time to allow myself to feel the joy that a new mother feels, because that's what I was."


I've started listening to podcasts while running (the only time in my life when things are "quiet"). I turn the volume WAY up so I can't hear my pathetic gasps for air. Recommend!

Then came this story, about a new program in which young people with Down syndrome write "Congratulation" letters to new parents of babies with Down syndrome. Now, "Congratulations!" is not a word I remember hearing much (ever?) at the hospital when Leo was born. Luckily, I think the world has changed a bit since then, but this campaign is still amazing and much-needed. An excerpt from my favorite letter:

"PS. This baby is going to be the best thing that ever happens to you."


Leo, 18 months. 

Yes.

31 for 21: Hello, Old Friend

I hardly read other people's blogs anymore let alone attend to my own blog, but I just saw that my friend Cate is doing "31 for 21" (blogging for 31 days of October) and thought, hey! That might be fun. And, um, challenging? Seeing as how I'm lucky to blog once a month let alone every day for a month. The last time I did this I think I had babies and prior to that I did it for years and years (also with babies) and well, what can I say? I'm getting older and (more) nostalgic.

We also won't talk about the fact that it's October 2 so I've technically already missed a post. Ahem.

I have a lot of ideas about what to write about. The trick will be formulating them into some coherent posts. I don't think about Down syndrome too much these days. Eleven years into this gig, Leo is just LEO. Sure I attend IEP meetings every year and certainly communicate with his "team" at school and teachers more than I do with the other children. But that just feels normal to me. I think having other children has helped considerably, in that I don't pin everything (bad) on Down syndrome. For example, when Leo was a challenging preschooler who ran away from me at every turn and refused to go to sleep at night (Ah, the good old days when I had to hold his door closed while he wailed), I blamed his Down syndrome. Fast forward seven years to TWO "typical" preschoolers who delight in running from me in the parking lot and not going to sleep at night.

Little did I, an inexperienced parent know that he was actually just being, you know, a preschooler.

More alike than different, indeed.

31 for 21: Here's the Thing

Warning: It's not all about Down syndrome around here. In fact, it's hardly about Down syndrome at all. (If anyone had told me, eight years ago, that I would someday write that as a caption for a photograph of two of my four children (Wait, WHAT?) I would not have ever believed them). This just goes to show you: You truly never know what will happen in your life.

I know you are all waiting in rapt suspense to see whether or not I will participate in  this year's "31 for 21" (blogging every day for the month of October in honor Down syndrome Awareness).

I'm torn. Part of me likes it as an exercise in writing (and sticking to something for an entire month is kind of fun). Selfishly, it's nice for me to have one good chunk of writing to look back on, since I don't post here nearly as much as I like to. But then there is the little matter of what to write? I know everyone says "you don't have to write about Down syndrome" but I do feel added pressure to somehow tie in the old extra chromosome, at least in some posts. I've written so much about Down syndrome that there is some level of performance anxiety involved now. Mostly, I don't want to repeat myself and bore you all to tears (any more than I already do-ha!).

And here's a funny thing: I started this blog in 2008 when my oldest son Leo was four, thinking I'd write mostly about Down syndrome, and that's indeed mostly what I wrote about. I started it as a way to process this Big Thing that had happened in my life and also with the hope that I would find a larger Down syndrome community beyond the one I'd found locally (which was fine, wonderful even, but for some things, more is more). I found that wonderful community, in spades.

I feel like I have beaten the Down syndrome horse. I wrote about our struggles with Leo's sleep and his behavior, about the hand wringing surrounding his school placement, about his eyes and ears and his adenoids and his teeth. I wrote about the grief surrounding his diagnosis and the eventual acceptance.

And then Leo graduated from preschool. Then kindergarten. Suddenly the language delayed little boy would Not Stop Talking.

And then his baby sister grew into a little girl.

And then two more little people came along, and then we were six. Then twin babies became toddlers. Life got even busier and more ridiculous (mostly in a good way).

And Leo still (obviously) has Down syndrome, but I think with every year that goes by, the Down syndrome has receded into something that just is. It's no longer at the forefront. All the questions are gradually being answered. Will he walk and talk? Of course.  Will he read and write? Oh yes. Will he stop running off in public places? Yes, thank goodness. Will his speech improve? Gradually, yes. Of course, knock on wood, we've been very fortunate have none of the major health problems that can be associated with Down syndrome. We've had the privilege of relative normalcy. At least, it's what's normal for us.

All of this to say, I think that mundane, not all Down syndrome, all the time can also be a contribution in this whole "31 for 21." Because to this day I remember the feeling of waking up in the mornings that followed Leo's birth, rolling over and looking at the light coming through the window of our little garden apartment in Park Slope Brooklyn, thinking: "My baby has Down syndrome. My baby has Down syndrome. And that's all I will ever think about again."

Because of course that's the farthest thing from the truth.

But in the early days, when Down syndrome loomed as The Worst Thing That Ever Happened To Me? I would have given anything to stumble onto a blog that talked about "American Horror Story" (I've decided I'm absolutely too scared to watch season two), the best Thai food in Portland, Oregon, the paper dolls I scored on eBay and Oh My Goodness You Won't Believe The Cute Thing The Babies Did Today. And did I mention my oldest son has Down syndrome? And that it's honestly (most days) no big deal?


If that's the kind of blog you're looking for? Then you've come to the right place.


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Just Don’t Say It

If you read this blog, you probably don’t use the word “retarded” as a humorous, descriptive adjective (you know, OMG! That’s so retarded!) But I’ll make a confession. Before I had Leo, I used the word from time to time. I just didn’t think about it. It was as simple as that.

But now I have Leo. And I get it. Boy, do I ever. And it never ceases to amaze me the number of intelligent, thoughtful, educated people who continue to say that someone or something is retarded. I don’t think most people even realize what they are saying, and that what they are saying is hurting people. And also? If you hear someone else say it? Call them on it. Tell them why it's not OK (believe me, I know this is sometimes awkward and uncomfortable, but so is hearing that word).

Regarding the whole “freedom of speech” argument? Millions of people find this word offensive. Hurtful. Isn’t that enough to take the simple step to eliminate it from one’s vocabulary? Retarded, truly, has to be one of the cheapest of shots.

In discussing this, I’ve heard friends and acquaintances say “but I don’t think of Leo as retarded!” As if that is some kind of defense/excuse. I understand where they are coming from and I know they mean well. But the fact is, the word “retarded” is hurtful. There are some amazing words out there. Retarded is not one that needs to be used.

All of this to say, today is Spread the Word to End the Word Day. Let’s all agree to not say it, OK? Take the pledge. If nothing else, do it for this guy:

Leo, circa 2008, age four. How can you say no to this face?

Leo and I thank you.

Questions: Answered Offensively Late, Pt. One

Back in October, in honor of 31 for 21 and National Down syndrome Awareness Month, I opened up my blog for questions. About anything. And I answered a few. And then I totally dropped the ball. And I’m sorry. One of my New Year’s Resolutions is to be more on top of things. To not let things hang. To finish things and be done with them and move on. Yes.

I hope no one was hanging on the edge of their seats waiting for me to answer these insightful questions, which I really enjoyed reading and so appreciate people taking the time to write. And After Words, I especially apologize to you since your question had a bit of a time element, as the child you wrote to me about might already be driving or graduated from college. Sorry for the delay. Sidenote: Did you ever talk to the family? I'd love to know how it went.


After Words asked,
Do you think it's appropriate if a stranger on the street asks you about Leo's DS? If yes, what form would you prefer the questions take?

I have an acquaintance with a son whom I believe has DS. There's no particular reason I need to know either way--he's a lovely playmate when we run into him at the playground--but I always find myself wondering when we see them. Again, I don't know what would change about our interactions if I knew the answer to the question, and it seems gauche to ask it. What do you think?

This is a tough one. Part of me wants to say, go for it. Ask away. I would rather people be honest than sit and stare at Leo and wonder. There is also the education factor. Leo doesn’t have to be the Down syndrome Ambassador of the World, but there is a good possibility that Leo might be the only person with Down syndrome that some people meet. I don’t want people to forget him (and hopefully they’ll remember him for good reason, not bad!) and I want people to learn something from him (hopefully something positive, that he’s not a monster, that he’s just a smart little boy with a great sense of humor who takes a bit longer to do certain things).

Having said all that, I admit that after over five years parenting a child with Down syndrome, I am still terrified to ask a parent if his or her child has it. I am serious when I say that I sometimes just can’t tell.

I chalk this up to the fact that I am so accustomed to Leo and his peers with their extra chromosome that seriously, they have started to look “normal” to me. Oh sure once in a while I’ll catch Leo with that look, and it’s unmistakable, but honestly, I think it’s sometimes really not safe to assume. It’s the same idea as never asking a woman if she’s pregnant (what’s that joke about how it’s only okay to ask in the delivery room?). You’d really hate to be wrong.

So Afterwords, here’s what I’d do. I’d ask the parents where the little boy goes to school (assuming he’s school aged, keep in mind many kids with DS start school as young as age two in an early intervention program as they transition to school-age programs). That will undoubtedly get the the ball rolling towards more info on the little guy. It seems to me it would just naturally spring from there.

Obviously some parents are more open, some are more guarded. Probably no surprise to hear that if you met me at the playground I’d talk your ear off and you’d be sorry you ever asked me anything.

I hope that helps.

Gratuitious photo of Mr. Handsome and me.

And Leo and his classmates, from a bulletin board during the holidays at Leo's school which I have titled "Visions of Sugar Plums And Other Things."