Early Halloween

I wasn' t kidding when I said these are days to remember.

When both kids are up BEFORE 5 a.m. (yup, you read that right), what else can you do but make the world's biggest pot of coffee and put the Dora episodes on auto-pilot?

I think Ellie has a little bug. A cold? Hopefully not the dreaded you know what (of course my mind shoots to swine flu). She's alternatively whiney, snuggly and playful. So hopefully it's not too serious.

And what's Leo's excuse? Who knows. Except that I think we can all agree he has enough energy to run a small planet.

Now if you'll excuse me, I need more coffee.

These Are Days to Remember

This is one of those moments that makes all the aggravation and tears and whining and exhaustion worthwhile.

Epic Fail at 31 for 21: Will Pictures Suffice?

I have not been the best 31 for 21er this year.

Once again, I will use these people

as an excuse.

Speaking of those people, it's been a while since I posted any pictures of substance. That's because my camera died. I had to wait until my new one was ready.


I think it's fair to say

that I love my new camera.

Or maybe I'm just crazy about my subjects.


In case you couldn't tell

we went apple and pumpkin picking last weekend.

There was also a hayride. It was pretty much kid heaven.


The day with nature wouldn't be complete without a little junk food.

Neither Leo or Ellie had ever had anything like this before (still not sure what to call it--it's a chocolate dipped marshmellow thingy, I guess).

They obviously both had no problem figuring out what to do with it. But Ellie definitely took a beating with hers.

We came home and played in the backyard. Ellie had so much fun she didn't take a nap.

We ended the day with a game of "Red Rover."

This is my new favorite picture of Leo-this is quintessential, ecstatic, happy, stubborn and nearly omnipresent joie de vivre Leo. This just captures him, completely.

The “Cat” Turns Cuddly

It’s a stereotype that people with Down syndrome are affectionate and cuddly and always smiling. While Leo certainly has his share of unpleasant moods, I’ll concede that he’s more likely to be happy than upset. Yup, Leo’s “default setting” is definitely happy.

And yes he’s quick to hug the waitress, the parking attendant, the doctor who administers the shot, but in terms of real physical affection, I’ve always thought of Leo as similar to cat in that he decides when to be affectionate. And when he's done, he's done. He'll arch his back, swat with his hand and turn up his nose (the only problem with this comparison is that I am not crazy about cats).

Leo loves to give hugs when he wants to. But he’s never been much of a cuddler, he’s too much on the move. Except for when he’s sleeping, eating, or watching his beloved “Dora” or “Diego,” Leo is in almost constant motion. He’s squirming in his chair. He’s flapping his arms. He’s kicking his legs. He's jumping from the coffee table to the couch (and no, he's not allowed to do this).

But there’s a new development in recent weeks. Leo has become a cuddler. Gone (mostly) are the days of him shooing you away when you go to rub his back or put your arm around him. He’s hinted that he was moving in this direction for a few months now but he never “tolerated” that closeness for more than a few minutes. Now, he’ll cuddle for book after book.

Last night, as I read one of Leo’s favorite Mickey Mouse Little Golden Books, he jumped onto the bed, crawled into my lap and proceeded to arrange my arms where he wanted them, which happened to be wrapped around his little warm body. He squirmed a little (I told you, he is always in motion) but he was quieter than I think he’s ever been for a bedtime book reading.

I am fascinated, challenged and yes, sometimes frustrated by the amount of energy Leo has. He definitely does have a certain kind of joie de vivre. But I can't tell you the simple joy there is in just sitting with Leo, holding him and listening to his raspy little breath, feeling his chubby little hands on my leg, watching him flip the pages of another and another Mickey book.

This is my kind of milestone.

Om Shanti

Today dawned early, 5:30 AM to be exact. It's as if Leo wants to make the MOST of his weekend days, and that he does.

There are upshots to being awake before the sun comes up. Let's just say we were one of the first families to arrive at the
apple/pumpkin orchard this morning. It was a picture perfect fall day. Crisp temperatures, sun, leaves at peak. Who needs New England when you have New Jersey (kidding, guys). Pictures to come.

We returned home with happy memories of hay rides and cider donuts and strange marshmellow/chocolate/sprinkle dipped concoctions, along with bags of apples (don't ask me what we're going to do with them) three perfect pumpkins, and two tired children. As soon as Leo announced he wanted to "play outside" (Ellie's room overlooks the backyard), I knew there would be no Ellie nap. And that was really OK. Because while Erin and I raked about 70-million pounds of leaves and Leo undid a good amount of our work (we piled, he jumped and unpiled-yardwork with Leo brings new meaning to the expression "exercise in futility), the kids really had a grand time.

They've recently discovered "Red Rover," ---Do you remember it from your school days? "Red Rover, Red Rover send--fill-in-the-blank-right over!" So there was a good hour of them bounding towards me, collapsing into my lap, laughter, breath, sighs of satisfaction.

They LOVE it. Leo could play it for days. And it seems that we did. And I even said to Erin tonight, close to bedtime, do you ever feel like your day is really three days in one? Or at the very least two? That we pack that much into it? Of course it doesn't hurt when your day STARTS at 5:30 AM.

So it's now barely 7:30 PM. Ellie and I skipped books and went straight to "Om Shanti," my go-to lullabye. It's funny, I have no memories of my mom singing to me but plenty of memories of my dad. He sang "Om Shanti" and "Eastside, Westside." To wake me up there was music too--Pachobel's Canon in D. Not a bad way to start the day.

Tonight when I sang, Ellie rested her head on my shoulder as I swayed. She's a big girl, but still loves the baby things, like being rocked and lullabyes (who doesn't?).

I lay her down and rubbed her back and gave her the usual speech (where we run through the litany of immediate and extended family who love Ellie). Tonight's repetoire was admittedly abbreviated: "Mama loves you and Mommy loves you and Leo loves you and Ruby loves you....Goodnight Ellie."

And with that I prepared to leave the room.

"And Grandma!" piped up an exhausted, small voice.

And Grandma. Of course. Yes, Ellie. Grandma loves you.

Big Foot in Training and a Day Off

I had the day off today. But a day off is really a day on for me, in that I'm able to get all the things done that I can't do when I'm, you know, working.

I did get to spend two luxurious, blissful, decadent hours at Target, All. By. Myself. Really to me this is a birthday and Hanukkah and Christmas, all wrapped into one, even when all I did was buy thrilling things like paper towels and toilet paper and Pull-ups. Trust me though, it was sheer heaven.

Then it was on to Costco for even more exciting things like milk and cheese and bananas and seltzer and that ever important half and half (for weekend coffee). THEY always get up early on the weekends, it's as if they are AGAINST us or something. So I must steel myself and be prepared and coffee is the best and least I can do.

Finally, it was home to unpack the disaster of a car and squeeze in one (of the hundreds, it's seems) of the backlogged DVRed shows--so much for my grand plans about fall TV, turns out I'm hopelessly behind on everything--Top Chef, Project Runway, Glee...don't even get me started on this sad topic. How will I ever catch up?

There was other stuff too. Laundry, then putting away last week's clean laundry, vacuuming, loading the dishwasher, baking soda-ing the kitchen sink, de-dog pooping the backyard (See, I told you it was exciting!).

And then before I knew it was 3:30 and time to fetch Ellie to go get her flu shot.  I know! Do the fascinating tasks EVER end? The sweet little girl was so brave. She didn't shed one tear for the shot, but limped dramatically out of the pediatrician's office, saying in a pathetic, small voice, "I got foo shot. I have owey."

We circled back to get Leo (I avoid taking two to the ped's office if I can help it). The final stop of the day was Nordstrom, to get new shoes for Ellie. You can say what you want about Nordstrom but I happen to think they have the best shoe department for kids. Or maybe it's just because that's where my mom took me. In any case, they give out balloons, so there's that. Leo was so exhausted by the time we touched down at the mall that balloons were my only hope.

We settled on these and believe it or not they were almost $30 CHEAPER at Nordstrom (than online). I know! When's the last time you uttered that sentence?

But. Ellie, the poor girl, at age 2.3, is...a size nine. Kind of shocking, to me at least. Her foot girth only means one thing. That she is following in the footsteps of my horrifically large feet. And so I pity her. And hope that at the very least she is prepared for the shoe woe that she will face her entire life. When you're fourteen and you ask to see a cute flat (that's displayed as a 5 1/2), it's not so cute when it comes out in a size 11. Just trust me on that one.

So, I'm sorry Ellie. I'm sorry in advance for your large feet.

And I still can't get over the fact that Ellie outgrows her shoes in three months, whereas Leo can wear the same size for a year. I swear his shoes wear out before he outgrows them. To this I can only say, thanks Down syndrome and your accompanying tendency for slow growth! You are saving us TONS of money!

Oh and also? Ellie is quickly closing in on Leo, who at age five wears a sizw 10 1/2. Scary.

We came and had apple juice and milk and wine (you can guess who had what). I made dinner (not from a box or frozen, but this), along with sauteed tofu with my aunt's amazing seasoning mix. It was lovely, if I do say so.

Really, the whole day was lovely. I had a great day "off."

Quote

"Realize that true happiness lies within you. Waste no time and effort searching for peace and contentment and joy in the world outside. Remember that there is no happiness in having or in getting, but only in giving. Reach out. Share. Smile. Hug."
--Og Mandido

They Want to Take Him Home

I met with Leo’s teacher for his parent-teacher conference today.

Leo marched into school like it was his place. He took me right to his classroom, knew exactly where he was going.

While I met with the teacher Leo worked on the computer, turning the little mouse right where it needed to go, typing on the keyboard.

Mrs. L started the meeting off with:

“We love Leo. He’s doing great.”

I was worried I was going to start crying right then and there. I mean, I wasn’t expecting bad news. There had been nothing to suggest Leo wasn't doing well. It’s just so nice to hear that he is, straight from the source. What can I say, Leo chokes me up. Often.

Mrs. L showed me what he’s been working on, handwriting, math, reading and vocabulary. She said he’s only had two potty accidents the entire school year (much better than he does at home but that’s another story).

So far, he’s only “run off” twice (I had concerns going in about the size of the school, the number of kids, Leo getting, you know, lost), and both times were en route to a trailer that the P.T. uses for therapy sessions. I guess going outside can get him distracted. I imagine him thinking Such pretty leaves on the trees! What a cool playground over there!

He still isn’t loving the lunches I’m packing (I’ve had to find more cold alternatives and he’s just not a sandwich guy). The teacher keeps asking me why I don’t want him to have hot lunch. Sorry, but the options are kind of junky sounding. He does get cheese pizza on Friday, which he loves.

Mrs. L. said she’s so glad that she thought to ask me (via a note in Leo's communication book) who “Ruby” is (she’s our golden retriever, aka Leo’s second best friend--after Ellie). Apparently Leo talks about Ruby A LOT at school.

The only real downer was when I asked about Leo's language. I've noticed in the last few weeks he seems to be speaking more, putting more words together (see the report on the four word sentence over the weekend) but Leo is still pretty difficult to understand. I asked Mrs. L if most kids at Leo's age get easier to understand as they get older. She said it's really hard to predict and it's very "individualized." What? No crystal ball? No guarantee that Leo will be one of those people with DS for whom speech is not a problem?

Oh well.

Mrs. L. concluded by saying that Leo is doing everything he should be and progressing nicely with all of his skills. And also, that “everyone in the school loves him, they want to take him home,” and that he “gives great hugs.”

All of this is wonderful, except for the taking home part. Sorry guys but he’s all mine. Although there are certainly days when I might consider letting someone borrow him for a few hours.

From a Syndrome to a Son

It’s hard to write about Down syndrome every day.

I know that’s not the rule during 31 for 21, but I feel obligated to at least address it, as much as I can.

And like others have said before me, I think the fact that I can’t write about it every day says a lot.

Yes, Down syndrome is a part of our life, it’s a part of who Leo is, but it doesn’t define him.

This wasn’t always the case. There was a time when I thought about Down syndrome nearly all the time. There wasn’t a day that I didn’t wake up, roll over and think “my baby has Down syndrome.” And yes, I was sad about it. I'll go ahead and say that I was full-on depressed about it. I woke sad and I went to bed sad.

In the mothers pushing the designer strollers through my Brooklyn neighborhood, I saw everything that I lacked. I didn’t get the “perfect” baby. While other babies started to sit and crawl and pull up, mine wasn't doing anything when he was supposed to. And I wondered if he’d ever do anything. Or if I'd ever feel like my old self again. Or if I'd ever think about anything but Down syndrome and how much I hated it.

But somewhere there was a shift. And I credit Leo for much of this. Sure Leo is challenging sometimes (what kid isn’t?). His language delay certainly complicates our communications. He gets frustrated. We get frustrated.

I hate that Leo requires annual blood draws to check his thyroid and CBC, that he has a 20 percent chance of developing leukemia, that for a few years we had to take him to the ENT every six months, eliciting hysterical cries from him when he had to be held down and examined (I think I still have some bruises from those brutal appointments). I hate that he had to have eye surgery at age three. I hate how raw and red his cheeks get in the winter time. I hate that Leo is five and he still often runs away from me in public places. Yes, I attribute all these things to Down syndrome.

But ultimately, I think the good outweighs the bad. And Leo is just Leo. He is a champion hugger. He loves to laugh and entertain. He is turning into a great little student who works hard in school and delights in pleasing his teachers and therapists (he's way better behaved for them than he is for me!).

Leo is a boy who happens to have Down syndrome. When you first get the diagnosis, whether it’s prenatal or you’re staring down at this foreign little newborn, it feels like all they are is a diagnosis. The baby is just Down syndrome personified.

And somewhere along the line they become people. With strong preferences and opinions. With senses of humor and preferred people and places and animals. The babies who love frozen blueberries and vanilla yogurt and crinkled up newspaper become little boys who love scrambled eggs so much that they eat them with their eyes closed. They become little boys who like to zoom around the house in a super hero cape, and play “Murderball” with a doll stroller. They become little boys who like to bake pumpkin bread and take their dog on a walk. They become little boys who flat our adore their little sisters (because teasing and torment is a sign of love, right? Right?).

Now when I wake up in the morning, I’m just grateful if the kids are still asleep (anything that will buy me fifteen minutes of peace to make breakfasts and lunches) and that the dog didn’t have an accident in the dining room and that I remembered to buy half and half for my coffee.

Most days, Down syndrome is really the last thing on my mind.

Sentence and the Rest of the Day Report

Leo said his longest sentence to date this morning:

"Where baby? Baby lost."

That is four whole words! He's always been more of a two word sentence guy.

It was in reference to Ellie's prized, beloved Baby that was not at all lost, just shoved under a couch cushion, most likely.

***
In other news, we're waiting out the Nor'easter here (cold, windy, rainy--a few degrees lower and there would be snow for sure) so it's been a strictly inside day. I've been working on trying to slow down, and I think we suceeded.

This morning I took the kids to a class at Leo's old school. It included yoga, an obstacle course and T-ball. It's nice because it's for kids with DS but they also welcome siblings.

We came home and made pumpkin bread. One loaf with cranberries, the other, chocolate chips.

This afternoon while Ellie napped, we watched cooking shows and partook in a cuddle marathon. Leo was fascinated by Julia Child.

That's my boy.

Asked and Answered, Round One

In my call for questions last week (the floor's still open if you think of any), Suz at (S)mothering Suburbia asked:

“We have some good friends who have a daughter with DS (she is Leo's age) and I don't want to offend but am interested in how their daughter is doing (just as I am about their son who does not have DS). I feel a little uncomfortable only because I don't want to hurt anyone's feelings - do I ask about the DS specifically, or ask generally how she's doing?”

This is a great question. I definitely think it depends on the person who it’s being asked of. I’m a very open person, sometimes probably to a fault, but generally speaking, I like talking about Leo. I appreciate when people want to know how he’s doing, what he’s up to. While I don’t feel that I need to be the “poster parent” for Down syndrome, I do feel a bit of a responsibility in the sense that I know there are a lot of misconceptions out there about Down syndrome. Leo might be the only person with Down syndrome that people ever meet. This is not to say that Leo needs to stand for every person with Down syndrome, but I like the idea of Leo putting a human (and pretty darn cute, if I do say so) face to something that is so often feared and thought of as a tragedy.

I think a general, “how’s x doing in school? Where does she go? What’s the program like?” is a good start. I imagine the conversation will take off from there and it should be easy to gauge how open the parents are to talking about their child. Some people are more open than others, Down syndrome or not.

Suz also asked:
“In a broader sense, what types of questions do you think are offensive to ask a parent of a child with DS? What do you wish people would ask?”

My all-time number one, most hated question is without a doubt:

“How severe is the Down’s?”

Just, yuck. And also? Please don't call it "Down's." Or "the Down's." I've even heard medical "professionals" refer to it as such, in fact they do so a lot. It's Down. After John Langdon Down.

And I have been asked the "how severe?" question a lot. And I know that people mean well, but it is not a good question to ask. It's impossible to answer since most kids with DS have an incredible range in their abilities. Leo happens to be speech delayed but he can write his name and sight read dozens of words. And he can run like the wind (trust me). So how do I answer the "severe" question? And really, who cares?

Another question people like to ask, which does not bother me but might bother some is “Did you know about the DS in advance?”

It’s a totally fair inquiry, maybe bordering on a tad personal, but nonetheless I have been asked it many, many times. That would be your call, not sure how close you and your friend are.

Which brings me to another “what not to say.”

Do not ask, "if you’d known about the DS, would you have had him/her?"

This actually happened to me. And it upset me for weeks afterward.

Sometimes, I’m convinced that people Just. Don’t. Think.

And also, I like People First Language. It can get a little cumbersome and annoying and overly PC-sounding sometimes, but I just appreciate the idea that people are people before they're "labels."

Jane is not autistic, she has autism. Leo is not a "Down syndrome boy" or a (even worse) "Down's child." He is a boy with Down syndrome. He is a boy, first. You know what's funny? Those aforementioned medical professionals are some of the worst people with this. They love to label. I'm sure because it's quick and easy for them to use shorthand with everything, even people, but come on. Take the time and use the extra few words.

Do you know what no one has ever asked me that I really wish they would?

"What do you wish you had known after Leo was born that you know now?"

For that question, I think I could write a book.

Thanks for the questions everyone! More answers to come.

Flashback Fall '06

My camera is broken and I'm waiting on the arrival of a new one. I was bemoaning this fact as the fall colors are hitting peak in our parts and I hate to miss snapping the
glorious colors even though yes, they look pretty much the same every year.

Right now is my absolute favorite time of year. The tree on our front lawn is a breathtaking blaze of yellow. Yesterday, against the inky gray sky the tree was just, lovely.

And then I found this picture.

It's little Leo, almost exactly three years ago, toddling down our new block. We were scared, excited Brooklynites, eager to make the suburban plunge, on a visit to our soon-to-be-house, maybe accompanying the inspector as he made the rounds on our new home.

Leo had only been walking for a few months. He was fairly steady on his feet, but still was essentially a tiny, menacing Frankenstein.

Ellie was nowhere to be found, was, as my dad used to say "a twinkle in our eyes."

My caption would read:
Look out! Here's comes Leo! Ready or not!

The leaves aren't so bad either.

Uncle

I got nothing. So this is a check-in. I will once again steal Holly Hunter's line from "Broadcast News:"

I'm nothing but a "dead lump of poured out flesh.”

The last 24 hours (particular the period on Monday between 5:35pm and midnight) have been nothing short of sucktastical. Trust me.

OK there's this that's good. Leo went on a fabulous sounding field trip to a working farm today. He took a hayride, explored a corn maze, met the requisite farm animals. It's great because he goes on the kindergarten trips with the "typical" kindergarteners and his aide accompanies him, to make sure he doesn't you know, get lost in the corn maze. I couldn't be happier.

Speaking of school, I love that Leo's teacher is so pro-email. And so conscientous. She called me last night to remind me to pack a juice box since Leo had the field trip (as opposed to a thermos-cup of juice as per usual). Of course I didn't listen to the message in time and so she had to send Leo to the farm with a juice box that she had in the class stash. She of course wrote me a note about this in Leo's notebook and emailed me about it (she wasn't being naggy about it-I think she just wanted to make sure it was ok that she'd done it. She was quick to tell me it was an apple juice box).

Love her.

OK so maybe not so "uncle" afterall.

Quote

I just finished Vicki Forman's heartbreaking but exquisite and extremely worthwhile book for any parent, especially of a child with a disability--This Lovely Life. I'm still reeling from it.

I thought this was particularly wonderful:

"It's so difficult to love another person and yourself for what they are and not what they do or who they could be. To stay in this moment and know it in all its pleasure and its pain. The world is a beautiful place. How often do we say this aloud?"

I expect this book will stay with me for some time.

The Little Things

I’ll admit it. I get rattled easily. Well, by some things. There are probably other things that don’t rattle me that would rattle others. Anyway.

Certain things calm me:

-Lying down (duh).
-Red wine.
-People magazine.
-Scratching my dog’s belly.
-Holding one (or both) of my children while we read books together. It's also fun to cuddle while watching TV, though that's not as P.C. sounding. Let's face it though, it's one of the rare times they're not in motion.
-Watching the kids sleep. Extra points for tiny, sweet snores.
-Drinking coffee and listening to the weekend podcast of “This American Life” on Monday -mornings while on the bus en route to work.
-Broadway Musicals, especially "A Chorus Line," and "Rent."
-Taking a walk on crisp fall day, the falling leaves fluttering around me.
-Handel's "Messiah." I could listen to it every day, year round. Just love it. It's like church and synagogue all rolled into one.
-Baking. Preferably something with chocolate or fruit in it.
-Gardening. Getting my hands dirty and standing back to see the finished product. It’s (almost) instant gratification.

And these guys.

I have them perched on the windowsill above the kitchen sink. It's the Little People I'm referring to. The little plastic horse isn't bad either.

I don’t know why, but Little People make me happy. And they make me smile. And heck no, I don't let the kids play with these guys.

Wordless Weekend

Ellie amongst the pumpkins.

Taking the day off from blabbering (sort of) today to take the hooligans pumpkin shopping.

A Morning Lesson

Leo’s bus has been late every day this week. And not just by a few minutes. I’m talking 20-30 minutes late. Optimist that I am (hush it Erin, I am an optimist! I am, I am!), I held out on calling the transportation people at the Board of Ed to complain. I chalked it up to some construction way down at the end of our block, or to (perhaps?) working out the kinks of the new school year.

So each morning, I’ve stubbornly rounded up the kids with the hope that TODAY will be the day the bus comes on time. Leo turns off Noggin (I mean, Nick Jr-they just switched the name), I turn off all the lights, we gather jackets and backpacks and lunchboxes, and we assemble in the mud room, the funny little space between the front porch and the living room. It’s where we keep coats and shoes and paper towels and Pull-ups and dog food. It’s the place I daydreamed of when we lived in Brooklyn.

I open the front door but leave the storm door firmly closed. It’s all glass, so we can see the precise moment the little yellow bus arrives. On cold days, Leo and I write words in the fogged-up glass. He points to objects around the room: “coat,” “seltzer,” “shoes” and is giddy as I write the letters on the milky pane.

Leo is in love with words.

He is reading sentences now. “I see yellow horse.”

OK, he pronounces “horse” as “whore.”

But we’ll get there.

Today the bus was a full thirty minutes late. I finally caved and called the Board of Ed. They informed me that Leo was put on a new route and didn’t I know? Didn't I get the letter? No, I actually didn’t know, and no, I didn't get the letter, but thanks.

Fuming, I hung up the phone, pretty sure I could actually feel the temperature in my blood rising. At my feet, Ellie squealed “my phone! My phone!” (She loves to play with my cell phone.)

“It’s broken,” I snapped at her, stuffing it in my pocket. I know, so mature, right?

The kids aren’t bad at first, with the waiting. They cuddle with their respective “comforts,” Leo with his dog and Ellie with her baby. They instruct me to sing songs. For a while, Leo is amused by the writing of words on the door. But it’s not cold every morning, so we can’t always write on the door. After fifteen minutes, they get restless. Ellie announces she wants to “go bye-bye.” Leo puts Ellie’s hood up, which infuriates her. The sibling feuding begins.

This morning, determined not to lose my patience and let the bickering/whining spiral out of control (it happens quickly), I sat down next to Leo, who was perched on the step between the mudroom and the French doors that lead to the rest of the house. He flashed me his killer, guaranteed-to-turn-any-bad-mood-around-grin and said, arms outstretched, “Baby, Baby,” (code for Hold me).

I scooped him up and buried my head in his neck and gave him at least fifteen kisses, one, after the next. He squirmed and giggled and threw his head back in hysterical, blissful laughter. And then he gave me one of his epic hugs. Most people who've had the pleasure agree: Leo gives the best hugs. He hugs with his whole body, with his whole being.

I've never met anyone who could laugh like Leo. Or hug like Leo. And don't even get me started on those smiles of his. Sometimes I try really hard not to let him, but he never fails to put me in a good mood.

And sometimes, it’s OK to be late.

As Promised

For Sale:

Adorable five-year-old boy. Curious, inquisitive, energetic, adventurous, goal-oriented. Great hair.

(see above photo for evidence of all of the above—except it's hard to see the hair but trust me, it's beautiful-that’s the entire contents of Leo’s dresser drawers, emptied into a pile and onto his bedroom floor. This “project” was undertaken in the wee hours of the morning, natch).

Price is negotiable.

300 and Question(s)?

After I hit “publish post” on my last entry, I realized I’d hit the 300 mark. 300 posts! In light of this milestone and along with 31 for 21, I thought it would be fun to do something a little different.

Have you ever wondered about something you’ve read here but been afraid to ask? Is there anything you’re clamoring to know about Down syndrome or living and working in New york City or suburban New Jersey or Portland, Oregon or tofu or Leo’s school/curriculum or two moms?

Or maybe you’re just wondering which kind of huevos the King of Scrambled Eggs prefers (Trader Joe’s organic cage-free—oops, blew that one).

Whatever your question is, now’s your chance to ask.

And if you're new to this blog, whether by 31 for 21 or another venue, you can also feel free to say hi. I love lurkers. I was one for many years.

I know this isn’t the rockingest, busiest blog ever (I’m looking at you Dooce), but I know (hope? please don't humiliate me!) I have at least a few readers out there who might have a question or two for me.

Come on. Ellie might bite, and Leo may growl, but I won’t. I promise.

The “H” Word

While waiting in line to park the car at the game on Saturday, the esteemed parking attendant took one look at smiling, waving, grinning, about to burst with I’m Going to a Real Football Game Excitement Leo and said:

“You should get a handicapped permit. For the kid.”

I know she was just trying to help. I don't think she meant to be rude. But for some reason, that advice? It just hit me right in the gut.

It sounds silly, but I think there’s a small part of me that often thinks people don’t notice Leo has Down syndrome. And really, I’ve had many people even say that if they didn’t know, they wouldn’t have, well, known.

Sometimes I think the Down syndrome is completely obvious. Other times, especially in photographs with other family members, I’m blown away by how much Leo looks like us. The whole adage “more alike than different,” it’s really true. And I see it in other children with Down syndrome too, the faces of their family members, comingling in their faces, along with yes, that "extra."

In other instances, I really see the Down syndrome. I mean, yeah, Leo has Down syndrome. I’m pretty much done with that game I used to play, when at a large gathering with other DS folks, I’d compare (but not really in a "good" way). Does Leo look “more” like he has DS or less? I know, silly. Like it matters. I mean, an extra chromsome is an extra. It’s done.

But the “H” word. Handicapped. I don’t know why it stings like it does. I mean, technically, yes, I guess Leo is handicapped. And like the old Seinfeld saying, there’s nothing wrong with that.

Certain things are harder for Leo. He needs a little extra help. No big deal and it’s just the way it is. It’s just like how I barely passed high school math and to this day know that if pressed there is absolutely no way I could do my own income taxes. And don’t even get me started on trying to put together anything made by IKEA.

I guess it’s just that when I think of Leo, I think of all the things he can do.

Leo can:

-Say the alphabet
-Sight read (what IS sight reading? Don't we all sight read?) I think, 50 words. Some examples: see, ball, horse, car, yellow, pig.
-Breaking News: He can read a sentence! "I see a yellow horse." I just discovered this tonight. I almost cried! My boy!
-Write his name (first and last)
-Count to 20
-Torture his little sister in innumerable ways
-Drive his moms batty
-Turn on the television and put it in a DVD All. By. Himself.
-Go into the refrigerator and choose what he would like to eat. A recent meal request was: grapes, orange soda and eggs. Don’t ask.
-Put on several paris of pants at once. This morning he woke up early and put on not one, but two pair of swim trunks, then proceeded to put his pajamas back on, over the swim trunks. When I asked him if he was having a fashion crisis, he answered “Yea.”
-Be very afraid of thunder, lightening and the dark. I think it takes real intelligence to be afraid.
-Be extremely patient. Sometimes I don’t understand what he’s saying and he will calmly repeat over and over the word until his slow Mommy understands him.
-Be extremely impatient. When he wants grapes or Dora, he wants them NOW!
-Water the garden. He loves anything involving a hose.
-Help out around the house. He loves to take out the trash, throw garbage away, set the table.
-Get really, really aggravated with the amount of pictures I try to take of him. Case in point:

-And the list goes on and on.

And that just doesn’t sound all that handicapped to me.

Will we get a parking sticker? I don't think so. I think it would be more fair to save those for the people who really need it. Leo loves to walk. He also loves to run. Quickly and away from me.

But that’s a whole other post.

Bottle the Day

Today was one of those dreamy, fall, but more summer-like days that you want to bottle for the dark, frigid, long hours of February.

We went to the little zoo at the end of our block so Ellie could fulfill her life's ambition of riding the "choo choo train." Truly, she rides it once and talks about it again for weeks.

She's started having little conversations with her things, toys, her dolly, Little People.

"You want this? Oh, OK. Here we go, here we go."

(She gets "here we go" from me. I didn't realize it but I say it a lot, apparently.)

Ellie's daily, growing language and vocabulary seems to be a bit of an equalizer, in terms of sibling rivalry. Now that she can literally call Leo out, "Don't do that Leo! That's my baby!" he seems less likely to pick on her.

But don't get me wrong. There is still plenty of pushing, "No Leo No!" and "Ey-YEE!" When Leo is wronged by Ellie, her bursts into crocodile tears.

Sitting in the Adirondack chair out back, watching Ellie drive her Little Tykes car while Leo collects rocks and acorns in a plastic bag, all of us bathed in a late afternoon glow, it seems impossible winter will ever come, just as it seems impossible to think these little children will ever grow up, will ever be anything but HERE, in this house, in this backyard, bickering little people who one minute want to do it themselves: "No, my turn!" and the next want to be "Baby!" (Leo's term for when he wants to be picked up). And of course there's Ellie's go-to, the ubiquitious "Uppy."

Just another Sunday.

Football Mascots and Player, Meet Leo, the Lover

Today we went to the Tulane v. Army game in West Point, New York. It was a beautiful (forgive me, I'm from the Northwest), gray, humid, cool day.

Leo hugged the Army Mule (mascot) multiple times.

He marched around the stadium in search of the "whore" (aka "horse/mule").

Tulane WON and Leo hugged a big, burly, sweaty player, at the end of the game.

I hope Leo's hugs mean as much to others as they do to me.

He has so much love to give, it both scares me, and touches me.

Leo held my hand the whole day. We have come so far. It gives me hope.

A Frowny First and a Deer in Headlights, Alone

Leo got his first "frowny face" on the weekly report he brings home every Friday.

He apparently "ran away" at recess. A first.

Honestly, I'm shocked it hasn't happened before. He runs away from me almost daily and it's one of the things that scares me most about him. He's much MUCH better than he used to be, but I swear Leo's impetuousness has turned me into a bit of a paranoid mom. I feel like I have no choice, if I'm going to keep him safe.

Anyway, I don't know what daycare and school do to the kids all week but by Friday afternoon they are Thanksgiving turkeys-stick-a-fork-in-them-they-are-done.

And Friday night bedtime (from which I have just returned)? A bit like a battlefield.

I had an unexpected day off today. I assuaged any guilt I had for taking Ellie to daycare (no guilt about sending Leo to school-the guy is kicking you know what there and is doing way better things in kindergarten than he would do at home with little old me) by being pretty productive. As much as I try to relax when I the kids are not home, I find myself a little "deer in headlights," so overwhelmed by the possibility of accomplishment that I end up freezing, not knowing where to start.

Grocery shopping seemed a good beginning and doing it without kids? Well there's just nothing like it.

I never thought the day would come that strolling around Costco and Target by myself with a large cup of coffee would feel decadent and luxurious, but this is my life. And at Target, I bought NOTHING fun (they were all out of the one, adorable orange shirt I wanted to get Ellie), heck, I wouldn't have had to buy anything, in fact would have paid someone just for the privilage of not being bothered by anyone. It is a rare, beautiful thing.

But it almost feels too easy. It's like I've grown accustomed to the whining, squirming, bickering twosome.

Doing almost anything alone now, well it kind of feels like cheating.

To Come: A Solid Month of My Rants (At Least That's the Goal)

A chill is in the air (here in the tristate area it feels like we went straight to winter!), Pumpkin muffins and lattes are on the menu and scarecrows and pumpkins are out and about in the 'burbs. And this morning marked the start of having to wrestle my children to the ground just to get the coats on. I forgot how fun fall and winter can be!

All of that to say...

Must be time for 31 for 21!

For the next 31 days I will do my very best to blog daily, in honor of Down syndrome, sometimes about Down syndrome, sometimes about the latest pair of shoes I'm coveting or the television show I once again didn't get to see (although thank goodness for the DVR which means I'll watch it, someday) or perhaps I'll just be naming the price at which I'm willing to sell my children.

I hope you'll join me!