Indeed

Favorite recent Q & A with Ellie: (In a conversation with her over the weekend, while trying to prepare for this week's move to the "toddler room" at daycare...)

Me: Ellie, who's your teacher?

Ellie: Leo!

How Do You Hold a Moonbeam in Your Hand?

Jen’s post the other day and of course all the activity surrounding Leo’s possible (and likely) big school change in the fall has had me mulling over some very light topics (insert sarcastic tone here) like inclusion and Kathie Snow's “presumed competence” (the notion that it should be assumed disabled people can do things just like everyone else, until proven otherwise). But the biggest so far, is one that Snow also touches on, which is the idea that our kids are "problems" that need to be fixed.

Leo’s school is Command Central for hand-outs. They must spend a large portion of their budget on photocopying, that’s how much they love to send out information to parents. A lot of it is helpful (news about upcoming conferences or classes), some of it not so much: “try to give your child a fruit or vegetable at each meal, substitute water for juice.” Really? No kidding! Never heard that one! Anyway, one bit on a hand-out sticks in my mind. It was about dealing with “difficult behaviors” specific to Down syndrome. The advice was simple: “Don’t question why your child does something. Your child is not trying to anger you (I would have to put a caveat here that I think Leo is totally smart enough to try anger me but I get what they are saying here). In other words, sometimes, Leo just can’t help it.

He does plenty of things that irk me to no end. And I question (at least quietly, to myself) several times a day why he does things like:
-Takes puzzle pieces from multiple puzzles and stuffs them under the entertainment center.
-Empties out the large (too large, must get rid of some) basket of Little People and disperses them all over living room.
-Tears tabs from “tab” books and breaks pop-up features on pop-up books. (He’s much better about this but he still has a very destructive tendency).
-Compulsively “messes” things up almost as compulsively as I straighten and clean (examples: pushes books off bookshelves, tabletops).
-Insists on shaking out the cup or bowl of whatever he has just finished eating or drinking (he only does this with bowls when he’s eaten fruit so it’s only water that he’s shaking but still…)
-Insists on plopping on his bottom and going Limp Noodle when he doesn't want to do something. Extra points if it's right in front of Ellie's door in the morning when she's still asleep and I'm trying to keep it that way and Leo throws in a nice deep throated "No!" for good measure.

Are you seeing a pattern here? It’s like he was sent from above to cure (or at least curb) my OCD, don’t you think? Totally kidding, and I digress.

One day a while back when I was really losing patience with Leo, a song popped in my head (this is not so unusual, as a lover of Broadway musicals I often have a song running through my head…). The song was “Maria,” from “The Sound of Music:”

She'd outpester any pest

Drive a hornet from its nest

She could throw a whirling dervish out of whirl

She is gentle! She is wild!
 She's a riddle! She's a child!
 She's a headache! She's an angel!
S he's a girl!


How do you solve a problem like Maria?

How do you catch a cloud and pin it down?

How do you find a word that means Maria?

A flibbertijibbet! A will-o'-the wisp! A clown!


Many a thing you know you'd like to tell her

Many a thing she ought to understand

But how do you make her stay

And listen to all you say

How do you keep a wave upon the sand


Oh, how do you solve a problem like Maria?

How do you hold a moonbeam in your hand?

Why does Leo do the things he does? Who knows? And if we squelch all those annoying and "unacceptable" things that Leo does, will we also suck the joie de vivre right out of him, a la the teenage employees with Down syndrome at Amy's Safeway?

And in addition to all the little pain-in-the-ass-but-not-really-consequential things that Leo does I could also ask, why is Leo’s default setting (in other words, his go-to emotion,) happiness? Oh sure he has his not so happy moments (many, many of them, actually) but why does he love to laugh more than anyone I know? Why does he try to hug pretty much everyone he meets or comes into contact with, including the doctor who just gave him a shot? Why, when Ellie hits him, is Leo the one to apologize? (true story, it happened this morning.)

From the moment Leo was born, he was considered a “problem.” There was something wrong with him. That blasted extra chromosome. And so began the journey to fix him.

Terrified of his supposed “compromised immune system” I took the year off work and designed our days and life around the various therapists who visited us at home. We paid out of pocket for the therapies the state didn’t cover and convinced myself that if Leo missed a session or two he would regress and be a doomed vegetable.

I spent a good deal of Leo’s infancy and early toddlerhood obsessed with early intervention. I don’t think I could have done it any other way with Leo, it was just my way of dealing. My focus on therapies and making him “better” masked the grief and occupied my busy mind, the one that was so focused on the sadness that ate away at me. There was much grief for the baby I was supposed to have, so much anger for the “broken” baby that I got instead. I had to channel those feelings into something constructive, to make me feel that I was doing something to make Leo “better.” I do remember reading advice along the lines of “Enjoy your baby,” I think it was in that terrible yet informative Babies With Down Syndrome book that so many of us read in those early days. Wendy says it even better:

“…don't miss it. Don't get so caught up in what your sweet baby is doing or not doing. Don't obsess about this step or the next step or the one after that or what is going to happen twenty years down the line. Because one day you'll look at baby pictures and think about how adorable that baby was and how all you can remember is therapy and you can't even remember what her hair smelled like…”

All of this is to say, Leo might be a challenge, he might make things more complicated, but he is not a problem. He is not someone that needs to be fixed.

I rush to assume Leo won’t be accepted or included or welcomed. To be fair, there is some precedence for this. When I set out to find him a daycare when I returned to work, let’s just say most conversations with prospective schools came to a screeching halt when the words “Down syndrome” were uttered. Whether or not this was legal is a whole other conversation. It’s happening again. We’re looking at other day cares (for financial reasons, otherwise we’re happy where we are) and I panicked that Leo will be accepted, that he’ll fit in and not be too much trouble.

But then things like this happen: I spoke with the kids’ daycare director this morning to let her know that starting this summer Leo would be getting an aid, sent by the district to help, give him a little extra help when he’s at daycare. The conversation went like this:

Me: He plays mostly by himself doesn’t he? I’m hoping this extra person will help integrate him a little draw him out and help him connect with the other kids. And as I’m writing this I’m thinking how in the hell is some stranger/grownup going to make the kids at the daycare want to play with Leo more?

So then the director goes on to tell me that actually Leo is doing very well (she’s seen him more this week since his school is on summer break-he goes back when the extended year program starts up again after July Fourth):

“Leo’s doing great. The other kids actually make an effort to seek him out. They seem to get the language thing [meaning that he might not talk a lot but that he understands everything] and he just loves them, hugging and kissing everyone.”

Oops to the hugging and kissing, but hey, if that’s our biggest problem? I’ll take it. Now if we could just get the rest of the world on board...

Be Careful What You Wish For

The stomachaches continue (for me anyway) on the topic of Leo’s new school. What seemed like a good idea at the time (having him go to the self-contained kindergarten/first/second grade at our local elementary school) has started keeping me awake at night. Is it the right decision? Will it be the right fit for Leo? Will he regress, as his current teacher fears? Will he get lost in the sea of a school that has no fewer than 500 kids and five kindergartens?

Last Friday at Leo’s Pre-K graduation I was an emotional wreck. I used to make fun of parents who cried over the sight of little four-year-old Timmy in his mortar board cap, marching along to “Pomp and Circumstance.” It seemed so absurd. It’s just Pre-K.

I still think the “Pomp and Circumstance” and mortar board wearing is a little silly but otherwise, boy do I Get It. This moving up to kindergarten thing is a big deal. They’re not our babies anymore. And I’m sorry but I think it’s a bigger deal when your kid has Down syndrome, or some kind of "special need." When you watch your little baby struggle to crawl and then sit and then walk and do all the things that the babies of the rest of the world seem to do without a care or a thought? It’s a big thing to see Leo standing there in his little cap, his Polo shirt tucked into his chinos, his little hands at his side as he prepares to lead his school in the “Pledge of Allegiance,” to kick off the graduation ceremony.

The district school placement social worker is holding my hand through this whole process. She listened to me patiently as I sobbed on the phone yesterday morning (Another thing: Can I please get through a conversation about Leo’s educational future without dissolving into a crying mess? Seriously, my eyes have been swollen for days). She assured me the new school is what is best for Leo. It’s the least restrictive environment. It’s what we have always hoped and dreamed for Leo, to be included with his typical peers as much as possible. So why am I suddenly a ridiculous ball of fear and anxiety and trepidation?

I talk big. I talk about the importance of inclusion but the truth is? I am terrified of the thought of losing the security blanket that is Leo’s present school. Without a doubt it is the most restrictive environment. All the kids have Down syndrome. There is no possibility for inclusion. But at the same time,it feels safe and warm and comforting and risk free.

The most I would ask is that Leo remain where he is for one more year, then move him up to the big bad world of a more inclusive environment next fall, when he’s six. But then I think, why wait, just because his mom is a big chicken? Because I know Leo sure isn’t. My only hesitation is that is old school doesn’t think he’s ready. They want him for one more year.

I’m a reporter both by trade and by nature. My instinct when faced with big (and sometimes not so big) decisions is to gather as much information as possible, get all the facts (and the feelings) organized and then see how things look, how they fit together. And so tomorrow I’ll go back to the potential new school to observe, this time without Leo. When I visited last week he came with me, so my time there was limited. In a few more weeks I’ll go to Leo’s old school to see the primary program where he would move to if he stayed there. We still have all summer to decide.

And in the meantime I will do my best to stop bursting into tears.

Wild Kingdom

Feeding time for the world's most patient dog.


By the way, buffalo and dogs live harmoniously together at our house.

Leave Me Alone, Come Back

Like most young siblings, Leo and Ellie seem to have a love-hate relationship. Leo is the classic older brother, extending a helping hand to his younger sister one minute and pushing her down next. Those sweet hugs he likes to give her are usually just sweet…but sometimes they turn headlock and interference is required. Ellie’s no innocent either. Every day she gains confidence. Her latest trick? She’s learned she can positively torture Leo by taking his beloved Dog. Extra points for taking Dog for a spin in the doll stroller. Boy does he hate that.

A few hours together in the house and we all need a break from each other (or at the very least a drive in the car and stop at the Dunkin Donuts drive-thru for iced coffee (mine) and Munchkins (theirs), aka Leo crack. Those blessed few moments where they can’t touch each other because they’re strapped into car seats: Bliss.

But then sometimes I turn around and see this (there was no coercing to get this shot, I swear):

When they’re apart, they ask for each other. One of Ellie’s first sentences ever was “Where’s Leo?” It’s usually the first thing she says when we come downstairs in the morning. On those rare occasions when it’s just Leo and me (doctor’s appointments, usually) and Ellie’s at daycare and Leo’s riding solo in the backseat he can’t stop with the questioning and the demand: “Ellie? Ellie!” I explain to him that Ellie's at her school. We'll see her tonight. "Yea, yea," Leo says, nodding in agreement. A few beats later: "Ellie? Ellie!"

They’ve started conspiring with each other. I’m not sure who discovered that the slight slope in the corner of our bathtub could be used as a slide (I know, who knew?) but it’s become a nightly slide-fest at our house. Just what I want, two small, slippery, naked people cannon balling into six inches of bath water. But apparently they need each other or it’s not as fun. Last night Leo got out of the bath first and Erin was drying him off in the next room. Ellie was trying to slide and calling “Leo? Leo?” Keep in mind that only minutes before, Leo had been swiping Ellie not so gently with a sopping wash cloth. Guess it's just not as fun to slide without an audience.

I just find it funny and sweet. Most of the time they play OK together. We’re working on sharing (it’s a work in progress). I call Ellie “ninny” under my breath several times a day because seriously she cries and whines about everything Leo does to her (even you know, breathing), when it's clearly unwarranted and completely benign. She runs to me to save the day more times in an hour than I can count. Leo is no better. He takes Ellie’s digs (stolen Dogs, misappropriated grapes) very personally. He has a special expression used only when “hurt” by Ellie. It’s a pout that rivals Molly Ringwald’s crossed with the furrowed brow of a cartoon character.

Clearly they aggravate the crap out of each other. But I don't think they would have it any other way.

All. By. Myself.

Notice anything about these pictures?






There are no children in them.

That’s because I went away this weekend. Alone.

That’s right.

All. By. Myself.

I’ve never spent a night away from Ellie. She is nearly two.

I’ve never spent a night away from both kids, ever.

I received an offer I could not refuse (Don Corleone had nothing to do with it, I assure you) and also, it was time.

I left Saturday morning, cruised down the Garden State Parkway and arrived in Cape May, New Jersey around lunchtime. (Sidenote: It felt hard to leave. I kept finding reasons to stall, kept "forgetting" something. It's not that I didn't want to go, I just felt so...strange).

The trip was a stunning blur. From the beginning, when all that had to be done was to throw clothes, a toothbrush and a few books and magazines, to the middle, when the biggest decision to be made was Where to eat dinner? and Should I take the trolley tour of the historical district or the guided tour of the Physick Mansion? To the end, which had me sitting at a bar drinking a beer, eating nachos and wondering just how late I could leave while still avoiding driving in the dark (I’m not a fan).

I spent a good amount of time alone in my twenties. I lived alone for a few years. I spent six weeks touring Europe by myself when I was 25. Since I’ve had kids though, I am very rarely alone. Sure I spend five days a week “kidless” but those days often start before 5 a.m. and begin with the flurry of the morning routine: getting myself and two other people dressed, making breakfasts and lunches, attempting to leave the house in some semblance of order…then I’m commuting, then I’m sitting in an office, then I’m rushing through the streets of Freaking Midtown Manhattan to catch my bus home . Yea, so NOT alone. And what I come home to is two exhausted little people who pack the day’s tumults and frustrations into two and a half frenzied hours. I try to make the best of our time together during the week, but it's not always easy.

This weekend had me thinking about how strange it feels to be alone now, to say nothing of the Responsibilities that have become the blueprint of my life. It is bizarre to wake up when you want to, to have only yourself to get ready. Then there is the luxury of sitting in a restaurant and being able to just eat your meal, with no need for damage control or refereeing or shame about the amount of food matter or cutlery that is plummeting to the floor. There is the wonder of asking the question, What do I want to do today?

I found it remarkably easy to turn off the “Mom” in me this weekend. It is so how I define myself these days, and yet I am so much more than that. The kids have a “hum” to them, they can (obviously) not ever be ignored, even when they are playing (however momentarily) quietly, there is a need for such constant contact that in their presence I find it impossible to Ever. Finish. Anything. A thought. A project. A task. Not complaining, just saying. And also, I know it’s not always going to be this way. Still, it’s beyond refreshing to have the time to finish something, or perhaps more importantly, to do Absolutely Nothing. Which is what I did a lot of this weekend (in addition to taking historical tours, whale watching, light house visiting, window shopping and wine drinking).

I still have interests outside of the kids, yet somehow they seem to swallow up so many of my thoughts, until I am away from them, and it is scary how easily I can forget.

Sunday night I pulled into the driveway and saw Erin standing on the porch, her smiling face waiting for me on the front stoop. And later, after I regaled Erin with tales of surfing dolphins and creepy 111-year-old inns (hint: don’t take a tour of “haunted places” when the hotel you’re staying in looks like something out of The Shining), I checked on each sleeping child. Leo was passed out as he is most nights with his face in a book and snoring loudly, his fleece blanket and Elmo comforter wrapped messily around his body as though he’d had a fight with them. Next door, Ellie sighed quietly in her crib, with Baby jammed between her neck and a chubby pink cheek and Bunny tucked into the crook of her little arm. She stirred a bit as I studied her, so I dashed out of the room, not wanting to take any chances.

Tomorrow it would all start up again. The mad dash, the making of breakfasts and lunches. It was almost as if my time away never happened. But it definitely did.

The weekend was plenty. It felt good to be home.

Costume Boy, Sentence Excitement, Summer TV, Loving (Certain) Mean People and Telling Time

Just another morning at our house.

Leo concots the best outfits. And he is so modest about them. Just this morning he unceremoniously emerged from the basement playroom wearing his jester cap, dragging his dog-on-a-string.

So. Another crazy week and it's ONLY TUESDAY. But it’s all a bit easier to swallow coming on the heels of my glorious weekend. More on that later.

A few notes:

-Ellie continues to speak in sentences more and more. I swear it feels like warp speed. Last week started the demands: “I want to eat that HERE mommy.” “I want to hold that.” “I want Baby (her doll) Mommy.” It is truly stunning. And fun. Her repertoire literally grows daily. And I can’t help but think it is awesome for Leo to be around.

-Both kids were on antibiotics last week (yes we all eventually got strep, the grownups actually caught it twice-yippee!) and both kids have become awesome medicine taking troopers. No need even for the syringe. Ellie drank her dose in the little plastic cup from the Tylenol bottle. How I do not miss the medicine headlock dosing dance. And then it became a competition, who can squeal and cheer the loudest for the other, for successfully taking the medicine! In case it was ever a question, neither kid is a baby anymore.

-"Mad Men" is coming back in August! I haven’t had much time for TV lately but I did start watching “Nurse Jackie,” starring the awesome Edie Falco. She uttered what may be the best line we'll hear on summer TV (I realize that's not saying much). This one’s been highly publicized on the Internet and in mags but it bears repeating as it’s so great:

“I don't like chatty. I don't do chatty. I like quiet. Quiet and mean -- those are my people.”

OK so maybe I’m usually not as mean aloud as I sometimes fantasize, but I admit a love for watching other people be mean. As Dorothy Parker supposedly said, “If you don’t have anything nice to say, come sit next to me.”

-Leo continues to be up most mornings between 5 a.m. and 6 a.m., sometimes a little closer to 4:30 a.m. I believe it is slowly killing both Erin and me. Not that we have a choice. The usual routine is to let him come into our bed to watch 30 minutes of Diego or Mickey Mouse Clubhouse (did I mention he LOVES Mickey Mouse now? We discovered it when we were in Mystic and our hotel had Disney Channel but no Noggin. And by the way, what is up with the theme song to Mickey Mouse Clubhouse? It has to be one of the most infectious and yes, annoying--Meeska Mooska Mickey Mouse? WTH?).

Unfortunately, Leo usually doesn’t want to watch more than about half an hour of TV in the morning (can you believe I’m complaining about my kid NOT wanting to watch TV?). Sorry, but when he’s awake closer to 4:30? I am all Bring On the TV. So I tried something new this morning. I told him we couldn’t go downstairs to play (what he wants to do when he’s finished with TV) until “the big hand on the clock was on the twelve and the little hand was on the six.” And guess what? He totally bought it. He tried to talk me into it being six when it really wasn’t but after a few more explanations and discussion of which hand was what, he left it alone and I got to close my eyes until glorious 6 a.m.
Every little bit counts, I tell you.