Saturday morning Leo and Ellie went to a mutual friend’s birthday party at a play space. I guess here in New Jersey play spaces are The place to have a party (we had an invite for Leo for another one in our mailbox when we got home Saturday night -yay I love parties!). I completely see the appeal but I think it’s funny though that we all finally (I say “all” in reference to the many people we know where we live who have made the exodus from cramped NYC apartments to “spacious” houses) have the space to have parties and yet it’s so popular to not have them at home.
That’s beside the point. Both kids had a blast climbing the massive play structure-and I do mean massive. It must have been 20 feet tall, basically it looked like a giant hamster activity center (the plastic ones with the tunnels). Ellie was pretty brazen for a little thing-she held her own with the three and four year olds no problem. I had a few heart pounding moments where I couldn’t spot either kid (I knew they couldn’t go far but it’s still not a mom’s happiest moment). And Leo is very fast. Thank goodness I did see him out of the corner of my eye sneak into the party room or there may have been far fewer cupcakes than the host had originally planned.
Leo pretty much sticks to himself at these things. He didn’t want to participate in circle time, wanted nothing to do with the jumpy-apparatus that was blown up after the dancing. Fine, whatever. He was content to climb and slide and climb and slide some more.
Both kids also had a great time with this contraption-not sure what to call it. It involved climbing a little ladder and then sliding while hanging. You get the idea. See an earlier post for a video, though the shot below does feature a lovely view of Leo's cute outie belly button.
And he was quite happy to go eat pizza in the party room but insisted on beginning his meal sitting under the table. I don’t know what it is, if it’s the noise or the crowds but he does this often when faced with a group of people. Just ideal for social situations! It was ok though. I mean, I’m over being embarrassed or self-conscious about it. Eventually he sat down and ate his pizza like everyone else.
Of course I would like Leo to be the Down syndrome poster child in these kinds of “typical” social situations and act like everyone else. Of course I think that invariably people see him doing something weird (eating his pizza under the table) and think that he’s being “weird” because he has Down syndrome and therefore people with Down syndrome are weird.
But like I said, Leo eventually came up from his subterranean position and joined the rest of the party. And he loved singing “Happy Birthday” (one of his favorite songs ever) and he clapped the loudest and longest of anyone when the song was completed. But then. After Leo was finished eating he jumped up and zoomed back out to the play space. I figure his thought process was
“good food, now I’m full, let’s play some more!” Makes perfect sense, right? The only problem is, there was another party going on in the play space. And after we ate it was our cue to leave.
Our exit was a touch humiliating. As much as I can say it doesn’t bother me that Leo ate part of his pizza under the table, it does bother me that I had to wrestle him into the stroller in order to control him from running away from me. Without help and with Ellie in tow, that was the
only way I was going to get us all out of that building in one piece. I’m sure the fact that Leo was exhausted didn’t help matters, it just would have been nice to not have to push my 4 ½ year old out of the party hysterically crying, in a stroller. But then I have to remind myself that Leo isn’t really 4 ½, developmentally. And I’m pretty sure we weren’t the only ones having party-exit-emotional-outbursts (though I honestly didn’t see any that were quite as vocal as ours). And there was a moment when I had to dash from the party room to the playroom to retrieve Leo when I left Ellie completely unsupervised so that was a little scary. It happened so quickly that I wasn’t able to grab a parent to see if they could look after her for a second while I attended to Leo. Not to be dramatic, I mean it’s not like she was playing next to a swimming pool or anything. When I went back to get her she was carrying someone’s mary janes around. That little girl likes shoes.
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Later that day was the New York City Down syndrome parent group/play group. I knew some of the parents in real life, others I’d only exchanged emails with (a few were particularly helpful when I sent out the desperate “sleep problems for a preschooler” email a month or so ago). It was a nice mixture of ages of kids, I think the youngest was seven months old. It threw me a little when one mom, her son almost two, smiled at Leo as he barked like a dog on all fours inside a “house” made of cushions, and told me it was “great to see older kids who were doing so well.” Wasn’t it just last week that I attended my first playgroup with infant Leo, studying the faces and movements of the “old” (four and five year old) kids with a mixture of curiosity, tenderness and terror?
Sorry, gratuitous baby Leo picture. Since I didn’t have a blog when he was a baby I feel that he missed out on being shown off as a newborn. That baby I saw on Saturday looked an awful lot like this:
As an aside, I know that all sleeping babies kind of look alike but it’s really eerie to me how similar sleeping babies with Down syndrome look alike. The little 7-month old on Saturday that we met, when he passed out on his mother’s chest it was like seeing a sleepy infant Leo. It almost made me shiver.In addition to the adorable sleeping 7-month old, there was a gregarious 8-year-old with a wonderful sense of humor. She told me “Babies (i.e. Ellie) are not allowed to play on boats” (there was a large boat climbing structure in the center of the playroom). She also reached over and while we were talking, sweetly (some might say I guess, inappropriately) tucked my hair behind my ear.
I met the mom of a toddler who told me her diagnosis story. We all have one, whether it was finding out on the operating room table (me) or prenatally and over the phone by a genetic counselor (her). She told me how insensitive her genetic counselor was, pausing to take another call and putting her on hold in the middle of the life changing news. Her description of the events in that phone call? “Retarded.” She said it with a straight face, and without missing a beat.
I waited after she said it, a second or two, expecting her to look embarrassed or apologetic. Wasn’t that word banned from “our” vocabulary? Ironically, I had just heard my beloved
Dan Savage use “retarded” on a recent podcast and cringed. He quickly followed it up with a humorous explanation that only he could get away with. Ordinarily, retarded as an adjective is a deal breaker for me. In fact, I just had drinks with some old friends and one of them dropped the “R” bomb, knowing full well about Leo. I stupidly kept my mouth shut and haven't thought of this "friend" in the same way since.
I once had a friend who used the word a continuously. It bothered me and I finally said something to her about it. Her response? She didn’t think of Leo as retarded, therefore the term wasn’t any insult. To her.
Where am I going with all of this in, to borrow one of
Amy’s expressions, this rather unblogosphere friendly length. I guess I just found the use of “retarded,” by the mother of a child with Down syndrome as interesting. But maybe some of us are like my friend, they don’t see our kids as retarded in that way. Our kids have delays. Our kids are different. Our kids do things in their own time. But they are not like,
retarded. As babies, when they sleep they look like angels. They sing “Happy Birthday” louder and longer than anyone at a birthday party. They sweetly tuck hair behind an ear. To be fair they also have ugly fits when it’s time to leave a birthday party, but they are not
retarded. Retarded is so school yard bully. So ugly. Maybe it’s that the original definition of the word has changed and been replaced by things like “special needs” and therefore retarded can be returned to it pejorative status, but not relating to actual people. Whatever. And they can say what they want but I hardly think we've come to the point as other minorities have in which we have "reclaimed" our ugly word (I'm thinking of the n-word, queer) into something that is no longer (at least to some) icky. Maybe I'm old fashioned but I still think it’s ugly and I can’t shake it. And I won’t use it. And it stings when I hear someone else say it, even if their kid does have Down syndrome.
