Dirty Little Secrets

This morning at daycare drop I was uncharacteristically not in a hurry and ended up chatting with another mom. Her son has autism and used to attend the daycare. This mom is always very friendly with me-I guess because we have that unspoken "there's something wrong with my kid" bond. Her son is three now (her younger son, age one is still in the infant room). I asked her how her older son was doing--he's in a self-contained classroom in the district, at the school Leo would attend if I hadn't created a bit of a stink and insisted he go to the Down syndrome concentrated school out of district.

She said he was doing ok. She's not thrilled with the program but she's trying to be more proactive about getting the things he needs. It's a struggle to get things done and also "be nice." And then she started on a whole other topic:

'We don't really have playdates, she said. "I feel bad. I know that other kids get asked to come over and play and we don't. I feel sort of like we're a dirty little secret. No one wants us to come over or invite us to their house or invite us to birthday parties."

Hmm. I never really thought about this. Ellie is still too young for playdates I guess. The ones we do have usually feel like they're more for me, where the kids and I hang out with friends who happen to have kids. But it's true if I really think about it, Leo doesn't get asked on a lot of playdates. There seem to be enough birthday parties but now that she mentioned it, he's only been invited to a handful of parties I can recall, in his whole life, that were not parties for kids with Down syndrome.

I never really considered the lack of playdates. Since I work full-time, the weekends are really all we have. I feel like the kids are social enough during the week-isn't every day for them kind of one big playdate?

But this did get me thinking. Is Leo excluded by his typical peers? Since he's my first, I don't have much to compare it to.

And then she asked me if we'd be interested in getting together some time. And I have to be honest, my first reaction was No. I realize this sounds bad. It's completely discrimanatory. But honestly? Leo spends enough time with non-typical kids. I really have no interest in getting together just because we have that lovely aforementioned bond.

And then this mom asked me if she could "ask me something personal."

I know from experience that this kind of lead up is either a) related to prenatal testing or b) how I got pregnant.

In this case it ended up being Option A. She wanted to know if I knew about the DS in advance.

I told her no and she immediately assumed I had no prenatal testing because you know the prenatal tests always catch everything (insert sarcastic tone here).

I quickly corrected her though. I had the Integrated Test, now I think known as the nuchal fold screening. It did come back slightly elevated for my age (1:350) but according to my OB, not high enough to technically warrant an amnio (in other words, the risk of amnio complications was higher than the odds that the baby had DS). The doctor went on to tell me this result translated into a one-tenth of one percent chance that the baby had DS. And also there was the "screen negative" result of my anatomy ultrasound, meaning the baby showed no markers and therefore tested negative for having DS, at least on-screen.

In other news: Don't ever ask me to trust statistics again.

Of course I know now that the only really fool-proof test is the amnio. But honestly, I don't think I really wanted to know with Leo. Neither did Erin. Not that I thought there was even a remote possibility that he actually had Down syndrome (I guess if I thought he had I would have gone ahead with the amnio).

"That must have been so hard, finding out at birth," she said.

I shrugged my shoulders. "Oh yeah, it was very hard, but in some ways now I think maybe it was easier than what you had to go through, thinking everything was OK and then...."

She nodded. "At first they thought it was hearing loss because he wouldn't respond to his name. They said it could also be autism. I prayed that I'd just have to learn sign language and that would be it."

We wrapped up the conversation. She didn't have a pen or paper to write down contact information. Would I go to her house if she actually ends up inviting us? Oh, probably.

Sometimes I think I'm really naive. Maybe Leo is being excluded. I feel better just not thinking about it. Our weekends are always busy, playdates or not.

Touchstone

There are certain people in my life who either are or were touchstones. Life is just not lived unless I “check in” with them. Funny how, for better or for worse, this blog has become that for me. Even if I have nothing interesting to say, I want to say something.

I tend to not write when I’m tired because I feel boring and boy, I’m tired this week. Dizzying days at work, coupled with tricky, sleep challenged small people makes me, well, b-o-r-i-n-g. So I’ll do my best here, but this is mostly a Check-In.

I’m so late that it’s almost why bother talk about it but last weekend was nice. A little hectic, but nice. I seem to have a hard time finding a graceful compromise between “busy” and over-scheduled. I feel torn between staying home and just hanging out (because we all need it and the small people seem to revel in it, at least for a few hours) and making Lots of Plans. I find myself getting antsy, if we don’t have plans. At least some kind of plan that is not a chore (say, grocery shopping).

Needless to say, the weekend (the weekend? It's freaking Wednesday! Why am I talking about the weekend here? I dunno. I'm grasping. Or maybe I'm still recovering from it) was comprised of the following:

-Some playing at home (inside and out-gorgeous weather!)
-A glorious almost two hours of alone time at Costco. It's almost scary how much I enjoyed this. I was so relaxed I didn't even care that the lines stretched nearly into the pharmacy.
-Erin doing all the laundry (Love Her)
-Leo's first Special Olympics training camp (siblings can come too and Ellie loved it as much as Leo)
-A playdate in Brooklyn (summed up with the following info: crowded playground made me both miss and not miss the old 'hood, a parallel parking job that I will be talking about for months to come even though there were no witnesses to appreciate my greatness other than Leo and Ellie), the irony that the now suburban family (gulp) ventured to Brooklyn for the day and we somehow managed to yes, visit the McDonald's drive-thru (for ice cream for Leo, it was the only thing I could say that would get him to leave the playground). Yes I would have prefered supporting the local, hipster gelato shop but couldn't fit the double stroller through the door.
-A playdate on Sunday with old friends from Ellie's infanthood (all the moms who stayed home are all now back at work and our infants are now, well, toddlers capable of playdates). I give you said toddler (with no friends in sight but trust me they were there) hamming it up:


She started out camera-shy but quickly changed her tune.




Notice the mini chocolate chip muffin. A first. She held onto that thing for Dear Life.

Speaking of plans, Leo has become one scheduled boy. It’s fun that he’s getting older and can really “do” classes now (at least that’s the plan). I already mentioned taekwondo starts this week. He also has a class (9 a.m. Saturday! Whee! Who am I kidding, it’s not like we Sleep In or something) called “The Three C’s: Cooking, Crafts and Ceramics.” That, I cannot wait to see. I mean “C.” Ha. I told you I was tired.

Typical Birthday Party and “Retarded” Playgroup

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.

Goopy Eyes, A Needy Dish Washer, Sex Pod(casts) and Oscar

I’m currently waiting for a call back from the nurse practitioner. It’s been a whole three weeks since either kid has been on some kind of medication so it seems only to be expected that there will soon be a trip to the pharmacy. I think Leo has conjunctivitis. I’ll spare you the gory details but let’s just say his eyes are a mess. Also he’s been severely cranky the last few mornings. Probably not related to pink eye per se, but generally when there is something wrong and he doesn’t feel 100 percent well? He gets mean and fights me on everything. He doesn’t want to put on his coat. He doesn’t want to get in the car seat. And there are tears, lots and lots of tears. Sometimes from me too but luckily this morning my hormones seemed to be in check and I was able to stay dry eyed.

So we’ll see what the doctor says. And yes, #1 Mom here still sent Leo off to school. I mean, it could just be a cold. And his school is going to this really children’s museum for a field trip today.

I’ve had one of those there’s nothing that exciting to write here weeks and so I haven’t said much, even though I vowed not to do that. There are little things, I guess. Ellie continues to be Whine Fest 2009 every night. Between 6:45 p.m. when we walk through the door and 8 p.m. when we head upstairs for bed/bath, she is Need Fest. She wants to be held. Every other word is “Uppy” and “Mommy, uppy.” I can’t blame the girl. She’s fought for attention all day at daycare. She wants her Mommy, and so who am I to say no to this? And frankly, I want my Ellie. But I also need to unpack the lunch boxes, unload the book bags and read teacher notes, make dinner, feed dinner, keep house in some semblance of order. I could go on, but I won’t.

And so, I give you the latest way Ellie is kept happy when I’m not able to hold her.




Yes, she has fallen in love with the sink. And the dishes. Yes, I let her play with dirty(ish) dishes and water while I cook dinner. I am careful to hide the knives/glass/breakables, but there you have it. Sometimes she soaks the front of her shirt by pouring water on herself but she keeps surprisingly dry. And she is happy.

In other news:

Gratuitous cuteness with tights and Converse and a hat (that Ellie keeps on her head for about oh, 3.2 seconds):



Tomorrow is going to be a whirlwind. We have a birthday party in the morning (both kids) and then we are heading into Manhattan for a play date with the New York City Down syndrome parent “support” group. I am anticipating/hoping for some in-car napping en route to the play group, otherwise I am going to have some exhausted hooligans on my hands.

I am currently addicted to podcasts. My absolute favorite is Dan Savage (sex columnist for Seattle's The Stranger). I love the fact that I am sitting on the bus next to a buttoned up Wall Street trader and I’m listening to Mr. Savage swear like a truck driver and talk about, well, sex. Also wonderful (but it also makes me cry for some reason, no matter what the topic, which is really OK as I have established that I actually like to cry) is This American Life. But they only post the current show for free, the rest you have to pay for and since I’m all about Free Stuff right now I’ve only listened to one podcast so far (though I'm a long-time listener to the radio version of that show).

Let’s just say all the sex talk makes the commute fly by.

And I leave you with Leo’s latest costume. When he’s in a good mood (which to be fair is most of the time) he sure can assemble an outfit. The fixins' for this look are courtesy of Erin's mom who resides in New Orleans. We were thinking this was sort of warm up clothes for Mardi Gras but we're not really sure.


This one is entitled "Aw Shucks."


Lastly, I am shamelessly, ridiculously excited for the Oscars on Sunday night. I've watched them since I was a little kid and I still love the turning the TV on early (an hour or so before the event) and watching the red carpet arrivals. The glamour! The dresses! The mind numbing interview questions! When I was a little girl my mom and I used to make "Noodles Oscar" (which was basically rotini pasta, chopped meat and tomato sauce, with sprinkled parmesan cheese on top) and sit on her bed and watch the ceremony while eating this festive concoction. This year I will rush through through the kids' bedtime and set the DVR to record the red carpet arrivals. Maybe I'll even make "Noodles Oscar," for old time's sake.

Edited to add: Just heard back from doctor. Of course she said to bring him in (whenever I mention my fear that he has an ear infection they say this). Then again, I don't think there is much I could say that would prevent them from telling me to bring my kids in. They just seem to really really like my kids. Then the front desk appointment maker lady told me that I should know that they are triple booked and running about 1.5 hours behind and that she's telling everyone to bring snacks, a blanket, a pillow...

Sounds great, doesn't it? I can't wait to take both kids to sit with a bunch of sick kids in a waiting room for two hours. Honestly even though germs run amuck there I would rather be in the main waiting room. Being left alone with Leo and Ellie in an exam room while we wait to be seen is most definitely the Tenth Circle of Hell, as Leo plays with the stirrups on the table, wraps the paper around himself mummy style, searches through the trash for hypodermics...I'll stop there.

So my plan is, I will hit the bar on the way home and have a few drinks and then take them to the doctor. Oh I kid. Sort of.