It Was Halloween. You'll Just Have to Trust Me.

As much as I would love to regale you with adorable photos of our Halloween (consisting of a neighborhood Halloween parade straight of out Norman Rockwell followed by trick or treating on our street on a blustery evening with the backdrop of an exquisite autumn sky), I cannot.

I forgot to put the memory card back into my camera.

I KNOW!

Oh well. You couldn't take photos of Ellie squealling "Mommy I'm having fun! I LIKE trick or treating!" No, but snapshots of those little moments are sealed in my mind forever, thankfully. And there will always be this.

Leo still hasn't mastered "Trick or Treat," preferring to greet his candy bearers with an enthusiastic "Happy Halloween!"

Nobody seemed to mind.

In other news, we made it! 31 for 21!

I want to say how much I enjoyed finding some new blogs through this fun and worthwhile exercise and once again thank Tricia for orchestrating it all. I like to think with our combined tenacity and creativity we're making some kind of difference out there, in terms of raising awareness of Down syndrome.

And I think it's safe to say that blogs have saved me a little, saved my sanity at least. It goes without saying in our busy little lives that sometimes it can feel like you're the "Only One." But I think we can all agree that is the farthest thing from the truth.

We're all in this together.

Thanks for following along this month and I hope you'll stick around!

The Fish Makes Progress

Leo today, "helping" me rake. This boy could eat a Popsicle outside in January, I swear (and mark my words, he'll try to).

Leo did SO well at swim class today. I haven't talked about it much here because, well, it's been a little rough at times. It's his first "independent" class in that there is no Mama or Mommy in the pool. Leo is a fish and LOVES the water but I think it's been a little shocking to him to be in there without one of us. Also? They work him hard in this class. He swims the length of the pool and uses a tiny floating noodle for support which means he's essentially treading water for forty-five minutes. But every single veteran mom I've talked to at this particular class says her child has learned to swim here so hey, that's good enough for me.

The class is for kids with special needs and each child is assigned a 1:1 aide. The last two classes he's had wonderful aides (they're all volunteers). Today he was paired with a father-daughter team which Leo adored. Have I mentioned he seems to have a thing for teenage girls? He hugged and kissed (or at least tried to) Miss Alexandra at the end of the class.

I watch Leo the whole time through a little room off the pool. I actually think it's the lifeguard lounge but no one has said a word about it being a problem. I have to, otherwise Leo will see me sitting on the sidelines and either cry or try to escape to me. But if I'm not there? Out of sight out of mind, it seems (though I'm sure that's not really the case).

Leo does better each week and today, did great the first thirty minutes. After that, I honestly think he just got tired (it's technically an hour class but once everyone gets in the pool it's really more like forty-five minutes, still pretty long for a six year old though, when you think about it). So after those thirty minutes in the pool today he did what he's prone to do, which is climb out of the water, sit on the edge with his arms firmly crossed and a stubborn "No way I'm DONE" look about him.

His aide today, Leon's dad (another member of the Club 47) was pitch perfect with Leo. I watched as he talked to him (couldn't hear what he was saying but there was obvious negotiation going on). Leo still shook his head and adamant NO. Then Leon's dad pointed to the rainbow striped beach ball that was bobbing by and Leo's eyes lit up. Yesss. Now we were back in business and Leo slid effortlessly back in the pool. They then proceeded to practice swimming toward the ball and Leo dog paddled toward it and it was all kinds of wonderful.

After class I thanked Leon's dad profusely and commented on how amazing he was with Leo.

"Oh I have a bit of experience with the stubbornness," he laughed, giving me a knowing look.

Sometimes? Sometimes it's just such a relief to be around people who GET IT.

Halloween Begins: Parade at Leo's School

I feel like it was just last week that it was last Halloween. This year I took Ellie to the parade at Leo's school for the first time and she loved it (what's not to love about five hundred "big kids" all dressed up?).


Aferwards we joined Leo in his class for a party. Obviously they take their celebrating very seriously.

Today the kids were precious and adorable and I thought what I think often, which is that this is all going by entirely too fast.

The Things We Do

At some point, Leo developed a bit of an obsession with "Hey Diddle Diddle." He has several books that feature the little diddy. He was overjoyed when he discovered all the versions on YouTube (this one is my fave, it's old school (from what I recall, anyway) "Sesame Street"). And of course, I downloaded a few interpretations for him from iTunes (seriously, what did we parents do without technology? KIDDING).

This morning, however, he demanded to watch "Hey Diddle Diddle" on TV. He was dressed and had finished his breakfast, so we were pretty much golden. But there's that tricky gray area between breakfast and the bus where Leo can sometimes teeter toward crabby. Sometimes I feel like I'm walking on eggshells to keep him in a "good" mood before the bus arrives. Most days, picking out what he's going to bring on the bus is a perfect distraction (yesterday it was the pink Dora umbrella and Ellie's Disney Princess clock (shh, don't tell Ellie). I can only imagine what the bus driver and aide must think of Leo (and me). But as I've said, whatever gets you on the bus, right?

So in the midst of a teetering on angry Leo moment this morning, I promised him I would find a "Hey Diddle Diddle" movie, fairly confident that Google wouldn't make me out to be a liar. It's not that I get Leo every little thing that he asks for, not at all, but honestly, he asks for very little. And I get kind of excited when he expresses an interest in something. And making him happy? It's not only priceless, but so very easy. And you can't say that about everyone, that's for sure.

Talk Talk Talk and GO TO SLEEP

I can't get over how much Leo has been talking lately. It's truly a language explosion. I mean, I'm talking stories here folks. Long, detailed tales...of what, I'm often not sure. Poor guy. I can sometimes tell by context, but often, as I've said before, it's full on charades around here. But I love that he's talking as much as he is. To me, that in itself is huge progress. I know we'll get there. And do I even have to explain how exciting it is when I do figure out what he's saying? And really, bless him for being the most patient person I have ever met. He rarely gets frustrated with his slow mommy.

Ellie on the other hand is at the other far extreme. She will.not.stop. Isn't life funny?

Speaking of Ellie, I just returned from her room where, at a little past 9 p.m. she's informed me she can't go to sleep because she's "tendering (pretending) her room is a school." This involves piles of stuffed animals with books in front of them and stuffed animals on her bookshelf which seem to be doubling as bunkbeds. Boarding school, perhaps? Oh and also? She can't go to sleep because she has the hook-ups.

It's hard to get too mad when she also keeps busting into my room to tell me "Mommy I just luff you!"

Sweet dreams to all. Eventually.

Hi

I'm sputtering out. I hope no one is disappointed in me. I'm going to really try to go out with a bang and get my act together the next few posts, honest.

And I'm having a hard time concentrating as right now Ellie is up there clanging around in her room, dropping Little People behind her bed and then demanding them to be retrieved and having long conversations with her stuffed animals. Every few minutes she opens her door and calls for me. Some nights are fine and she goes right down. Some nights, no.

So.

Does anyone have any questions? About anything? Down syndrome related or no?

Help?

:-)

Fail

I missed posting yesterday. My first fail of the month. Gah. I'm not even going to get into the excuses because I'm pretty sure no one here really cares how tired I was last night. I'm going to try to post twice today so that will still be "31 for 21," right?


It was another beautiful fall weekend here. Seriously I just want to bottle up these days that are just so bright and clear and mild with just the perfect touch of appropriate chill to the air, the backdrop of everything being glorious changing leaves. I. Love. Fall.

I do not, however, love the raking of those glorious leaves. I managed to rake most of the backyard and then there was a bit of a logjam getting the leaves from our backyard to the curb. See above. Hopefully this year I will get them to the street before the snow arrives.

As I mentioned, Leo was a little under the weather all weekend so he was extra cuddly and at times, a little extra cranky. Sunday afternoon after a busy morning of playing Chuck it with Ruby outside, Leo, Ellie and I piled into bed for some quiet time (since there would be no napping). All I can say is thank you Nick Jr. for the Halloween marathon. It was just what the doctor ordered.

In bed Leo asked for a snack and then announced that he wanted an apple. Since I had just brought him grapes (inhaled in five minutes) and then a banana, I told him he could get his apple. So he disappeared downstairs for a few minutes and returned with not one, but three apples, one for Ellie and one for me too (though neither of us had asked for one). That boy. Even when he's crabby, he's a sweetie.

Bet You Didn't Realize This Was Also a Recipe Blog

Today we finally built a fire in our outdoor fire place. Fire pit? Anyway, it was a gorgeous fall day. Absolutely perfect. I did some raking. The grass is clear but all the leaves are in a gigantic pile that leads halfway down the driveway but hey, I did some raking!

There was much happy play. Leo is a little under the weather with a bit of a cold. He's always such an extra sweetie when he's sick. I hate that he doesn't feel well but I love the extra cuddles and the overall mellow(er)ness. Yes, that's a word. I just made it up. We skipped swim class and I think it was a good thing. And I'll be honest, after a busy week it's pretty nice to not have to go anywhere.

There's a brand new pink car seat in our dining room and a brand new (to us) pink car seat cover on the way in the mail (thank you nice Craigslist Lady). Let's hope this ends the War of the Carseats.

Back to the fireplace. It was a little windy. The wood was a bit damp. By the time Erin got the fire going and I'd gathered the s'mores ingredients, the fire was...small. And yes that's code for did you know it's possible to make s'mores in the microwave? Well it is. So now you know.

Take Your Ellie To Work Day

Ellie came to work with me today.

She was very impressed by all the "high buildings" and loved seeing the swarms of taxi cabs (she's a fan of the "Taxi" song). But ultimately, I think if you asked her she would say the highlight was definitely the candy corn on my desk.

Look at that concentration. You could power a small city with that intensity.

She kept asking for "just one more" (she is the absolute queen of just one more).

At the end of the day she announced she was taking one corn home for Mama and one for Leo. The corns lasted about two blocks.

TGIF!

Sometimes I Can’t Believe This is My Life (Or: It's a Good Thing They're Cute)

Do you want to know what the latest thing to make my heart race and blood pressure mount is? It’s not lost children or a near car accident (OK of course those things freak me out). Lately it’s been something quite mundane that fuels the adrenaline.

It’s getting the kids to get in their car seats to go somewhere. ANYWHERE.

At some point, a war was declared. They both want to sit in this seat.

Post Easter fest at daycare, 2009 (Ellie found the chocolates unbeknownst to me until it was clearly, too late).

And ironically, they both want to sit in the seat, that happens to be too small for either one (don’t worry, I ordered Leo a new one today). He informed me he wanted a pink one which, fine, expect I’m anticipating Ellie will not be pleased about this (read: JEALOUS) and perhaps a whole new war will begin.

What happens is this: They bound for the car and both try to sit in the same, pitiful, gray six year old car seat. There is nothing appealing about it except for the fact that they both want it. Whomever doesn’t get their tush into the seat fast enough pouts. If it’s Leo, he will often run to the back of the minivan, vault over the third seat and into the trunk, cackling all the way. Awesome. If it’s Ellie, she will sit on the little storage bin between the two front captain’s chairs and pout and whine and stomp. Equally awesome.

Tuesday I was almost late to Leo’s parent-teacher conference because of their little shenanigans and I assure you, I am onto them and anticipate this happening every.single.time.we.go.anywhere. If we have to be on time to anything I always leave extra early now. Did I mention on that Tuesday that it took them fifteen minutes to settle the argument of who would sit in that darn car seat?

At night, when I pick them up from school and it’s cold and dark and all I want to do is get home and unload the car and make dinner, there is Ellie, whining about she wants “that chair” and there is Leo, taunting me with his laughter.


During more peaceful car seat times (sidenote: poor Leo--you think he has a cold in that first picture?).
No amount of pleading works. Counting to five or ten seems futile. What I am almost always forced to do is physically begin to put one of them in their chair (which I assure you is hugely popular—NOT). They wiggle out, cry and insist they can do it themselves. Which they can. Eventually. Eventually being the operative word here.

What I wish for is two identical pink car seats but I just don’t have a spare $500 laying around (what two of those puppies would cost—I know, yikes!).

There was also discussion and both Leo and Ellie agreed that if they could have "Princess covers" on their respective car seats that then, they would sit in them and not argue. Well it turns out they don't make Princess car seat covers (which is pretty shocking since they make everything else Princess) and honestly if they did I might have a hard time actually buying them. I did briefly consider these but don't know if they would do the trick. I'm telling you, desperate times call for desperate, well, you know.

So free time is being spent trying to find a pink car seat covers online for Leo's old chair, which is soon to be Ellie's new chair (dang they’re spendy too, even on eBay, costing more than some car seats, even). Of course Etsy has stinking adorable ones. I did find a promising looking used one on Craiglist but am waiting to hear back if it’s still available (and you know how that goes).

I realize, in the grand scheme of parenting and behavior troubles this borders on absurd. In terms of writing this post as a part of “31 for 21” during Down syndrome Awareness Month, let’s just say Leo and Ellie have a delightfully typical sibling relationship, as illustrated by the Car Seat Ridiculousness of Fall 2010. In short, they love to drive one another bonkers (and me right along with them).

Needing a Do-Over. Or Maybe Just a Weekend.

Tonight was one of those nights. I was still on the bus at 6:30 p.m., still not really anywhere near home, when I should have been pulling out of the preschool parking lot. The turnpike was the proverbial parking lot.

Cranky people on the bus talked too loud on their cell phones. We finally reached my stop and I sprinted to the car and then sped toward school and there were Leo and Ellie, the last to be picked up (though the director assured me that many parents were late thanks to an accident on 280). Yes there were my children, dancing in the parking lot (under the watchful eye of the director, don't worry) under the light of a plump, autumn moon. They shrieked when they saw me as they always do, and suddenly ninety pounds of squirming love were bounding toward me.

We came home to a hot cheese pizza (Erin brilliantly ordered delivery) and the bubs got to watch "Diego" while eating dinner. Hey, it was late and the evening was a lost cause, let's face it. Did I mention Ellie was sneaking sips of my Diet 7-Up?

I'm sure they thought the whole thing was great fun, but me? I'm tired. Tomorrow is Friday, right?

He's That Kid

“Well, you know Leo is very special,” began Mrs. L. at this morning’s early morning parent-teacher conference.

I rolled my eyes and giggled a little, “Yeah, special, I’ll say!”

Hey, a little humor never hurt anyone, that’s my motto.

“No, really,” Mrs. L. continued, reaching over to touch my arm. “Really.”

So the first good news is that in spite of Mrs. L's accolade, I managed to not cry (happy tears) at this term’s parent-teacher conference. Leo is doing well. Handwriting is progressing; math is going well. He’s apparently a master colorer (this is big in terms of hand writing). Socially, he appears to have broken up with his little girlfriend (ah, young love) but is good buddies with a boy in his class named Terry.

His favorite subject appears to be social studies. He reportedly enjoys listening to a lesson and then answering questions about what he’s learned (he’s that wiggling kid in the front row with his hand always up, says Mrs. L, which I love).

Of course the transitions we struggle with at home are nowhere to be found at school, which is wonderful (I’d rather he behave at school and fall apart at home but still, sure doesn’t make our lives any easier). The noise sensitivity he displayed last year seems to have dissipated so that’s good. He’s starting on the Edmark spelling program, which will mean his homework is a bit more time consuming, so we’ll see how that goes. And he’s going to have weekly spelling tests which for some reason is exciting to me.

But perhaps most importantly, I learned that Mrs. L. prefers tea over coffee, making my holiday gift preparation much easier this year.

And, pictured above, my little drummer boy, just because.

Mornings

I can almost hear the crickets around here lately. Yes it's been pretty exciting. And so tonight, I shall continue the shenanigans by writing about how I am SO NOT the mom who does things the night before and yet tonight I was required to be because not only do I have to be out of the house by 7:15 with both kids but I have to be at Leo's parent-teacher conference at 8 a.m. I'm sure many parents do things much harder than that every day and to those who do, I salute them! But I, well, they (I'm looking at you Leo and Ellie!) are slow moving morning people and definitely creatures of habit (like most kids). I will do my best to declare tomorrow morning an "Adventure" (they love that). In the meantime: Coffee. (For me, silly.)

Gaaaaahhhhhh.

It will be fine. I made the lunches. And most importantly, did I mention I readied the coffee pot?

In more restful news, this morning Ellie came into our bed around 5:30 a.m. She has definitely corned the market on pathetic now that she's in the Big Girl Bed. I hear her little footsteps outside our door and then her quivering tiny voice: "I want to come to your room, Mommy." This morning she fell back asleep, almost instantly. Shortly after her appearance, Leo showed up, climbed into bed and somehow sneekily lodged himself between Ellie and me. He is a heat seaking body heat missile, that boy. Soon, he was also snoring.

Thirty minutes later, my alarm went off. I hit snooze, rolled over and watched the two little peaceful people in my bed for a few moments longer. Pure, brief sweetness.

Conundrum Status

With plans to go sort of DIY Superman for Halloween this year (Leo has a cool cape already and several Superman Ts to choose from--all that was needed were some blue leggings) Ellie and I hit the mall this morning to complete Leo's look. But first, Ellie got a Louise Brooks bob (pictures to come) and then we headed to the usual suspects in search of the needed Man of Steel pants (Gap Kids, A Children's Place, Macy's). And yes, I'm pretty sure Superman totally shops at those stores.

Nothing.

On a whim I decided to hit Old Navy on the way out, even though we were in jeopardy of being late for our play date. Well, it was hard to justify spending $19.99 on the "perfect" blue leggings (which I did spot) when I found this ensemble, on clearance for $4.99!

Often, it's for the best when you don't find what you want, because sometimes, you find something even better. Ah, little life lessons from the mall.

Weekend Update

Today was Leo's swim class. I'll write more about this when I am more awake but today was a pretty good day for him. Too bad he flips out if I watch poolside (he'll try to leave the water and bound into my arms). So I get to spend most of the class in the lifeguard lounge right off the pool. I watch through the window as he bobs up and down on his little noodle and foam barbell. He's also working on kicking and dunking and paddling.

After swimming I let him play at the community center playground (his big reward). We played catch with a ball and he climbed on some of the structures. It was crazy windy and quite cold. When it was time to leave, he left with no problem. For some reason I find when Leo is alone (without Ellie) he's just so much more agreeable and less stubborn. I guess it's an attention thing, I don't know.

Maybe he left so swiftly because we were off to one of his favorite places. The grocery store! While he snacked on Veggie Booty, I did some quick shopping. Then it was home for some quiet rest time (well, I made apple crisp and did laundry, so not all that restful, but certainly relaxing). Later we played outside in the backyard and I marveled at how downright cold it is now and how it seems like just weeks ago the kids were half naked in the backyard and painting. Time flies. I also decided it was just way to windy to bother raking. Right.

The kids passed out in 2.9 seconds tonight (love it). Now I'm going to watch DVRed "30 Rock" and "Parenthood." World's Most Boring Post. And a rocking Saturday night!

On the Eve of the Weekend

I don't have anything very profound to say. It's Friday. I'm tired. We made it through another week and it was a lovely Friday night. I broke out the new Disney Princess Sing-A-Long DVD that arrived in the mail last week and I can honestly say the house has not been as quiet as it was while Leo and Ellie watched that (and yes, I've become a bit of a Princess Enabler. What can I say?). They were completely enchanted. At least temporarily. I honestly think Leo likes Princesses now because he sees how happy they make Ellie.

For dinner I made grilled cheese sandwiches with Swiss cheese and turkey and apples (from picking last weekend, we still have a TON) and cranberries and dijon mustard. OK the kids had plain old grilled cheddar if I'm going to be perfectly honest here. We let the kids eat their sandwiches in front of the TV which always elicits shrieks of joy and jubilation. Hey, it's Friday night.

I can't describe the feeling of peace and contentment that falls upon me on Friday evenings when we finally arrive home. We pull up to the house and no lights are on and I know that inside it's a bit of a wreck and there are piles and piles of laundry to be done and then folded and put away and rugs to be vacuumed and floors to be swept but no matter. Because we get to be home for two straight days and the most that we have to do is swimming class for Leo on Saturday and a play date on Sunday and throw in some coloring and Play Doh and raking leaves (jumping in leaf piles). I also need to do a lot of baking or cooking or both, requiring apples.

After the kids go to bed there will be magazines and books and wine and maybe a movie. And of course, Scrabble on my iPhone (it's an illness, truly). And oh yeah, those chores but they never go away. We'll get them done. Or we won't.

It's just nice to be home.

He's an Artist. He's a Techie

Leo is becoming quite the artist.

Here’s one of his favorite things to draw, and one of his favorite things in general.

Yes, it’s a horse, or as Leo refers to it, a “whore.” It’s true, he’s a little embarrassing to take to a farm when, upon seeing the horse he exclaims, “Whore! Whore!” at the top of his little lungs. We just keep walking.

We weren’t sure what this was. It was drawn on the back of the horse drawing. Erin suggested perhaps it’s a tick that was on the horse? An homage to the New York City bedbug epidemic of 2010?

In other news, we woke up with a start yesterday morning. Erin uses her iPhone as her alarm clock and Leo is an expert with that thing. He’s also mastered the art of silently sneaking off with it. He is an iPhone ninja. That's why, at 6:12 a.m. “I’m a Little Teapot” began blaring from YouTube. Let’s just say Erin and I were both definitely awake.

I know there’s been plenty of talk about using technology, specifically iPads for kids with speech and other delays and communication issues, but I have to say, it’s just incredible how quickly Leo (and other kids too, I know he’s no special case) figure out how to use these devices. Within minutes, Leo figured out how to scroll through pictures and (as explained earlier) access “saved” YouTube videos. Incredible.

Then there was the time that Leo set a security pass code on our cable, rendering it, gasp, temporarily inoperable. But we won’t talk about that.

Costume Conundrum

Halloween-wise, Ellie is set. Grandma Jerry sent her a great thrift store score last month, a Snow White costume, to which she immediately announced she wanted to be, what else, Snow White. Awesome and so easy! (I didn’t bother to tell her that a Belle (her fave) costume exists, figuring what she doesn’t know won’t hurt her).

This seems to be the first year that anyone really has an opinion on what they want to be, which is kind of fun.

Last year I offered up the Clifford the Big Red Dog costume to Ellie and she was Miss Agreeable.

Leo went as a dog (the dog costume was also conveniently on hand), which is probably not a shock to anyone.

Last week Leo wanted to be a princess. I’m trying to convince him that he’d make a great pirate (we happen to have the accoutrement for it). But this morning he announced he wants to be a witch.

I’ll keep you posted.

Pickin'

And now, the pictures.




They will actually pose together now (sporadically). Leo always wants to hold on to Ellie for far longer than she'd prefer though, and invariably, kissing is attempted.

Leo kept sticking out his tongue in the pictures. Hey, if you can't beat 'em, join 'em.


My dad noted something quite interesting about this photo: "Leo is such a love bug even when he takes a bite out of an apple it is in the shape of a heart," my dad wrote to me in an email, after I sent him this photo. Well, would you look at that?

Silly geese.


Grandma Jerry (Erin's mom) showing Ellie the finer points of apple picking.

Moving on to the pumpkin patch.


I am captioning this one "Tote that barge, lift that bail. Get to WORK Ellie!"
She is, apparently, very serious about her pumpkin patch.

Nerd Alert

Since I’ve already confessed my doll house hoarding issues, I may as well come right out and say I’m a huge nerd about decorating for the holidays.

I love it.

Front porch
I have to give Erin credit for the outdoor decor this year. She was definitely the brains behind it and I think she did a fabulous job.

Wide shot

I think I get it from my mom. She loved it too and did what I do, which is scour garage sales and thrift stores for décor. Not to mention post holiday 75-percent off sales. Those make me positively swoon.

Side yard

I got these little bears at Goodwill a few weeks ago. I made a trip there to drop off some donations and...well...yeah. I thought these guys were so hokey that they were ultimately, cute.

This seems to be the first year that the kids will leave the decorations alone and not try to, you know, wreck them, so that’s a bonus. I don't care if they play with the unbreakable ones and luckily, most of them are.

The quality on this photo is horrific (sorry), but I had to show off this little garland.

If you look closely, you see that the little balls are actually pumpkins. I know. I pretty much died from the cuteness right there at Goodwill. And when I realized a gigantic roll of it was $1.49, well. My fate was sealed.

You can't tell by looking at it but this bowl is big. Big enough for a centerpiece. I lurve it. It's another Goodwill find from my "dropping off bags" errand. Someday when my adorable Clumsies #1 and #2 are bigger I might actually use it as a centerpiece.

The holiday fun doesn't stop in the kitchen! This little ($2.50 each) find from Target put me in a good mood for an entire afternoon.

Life can be hard. May as well decorate!

A Confession and Just Another Gorgeous Autumn Sunday

I have a small problem.

It's an addiction really.

It is completely impossible for me to resist purchasing doll houses at garage sales.

Ellie and I found this one today at what was billed as a "garage sale" but was actually an estate sale. Ellie took one look at that beauty and said "I want to take this to my house." I couldn't say no when I found out it was $2. And yes, I searched futily for vintage Little People. This house isn't vintage (1993 though-not a spring chicken!) but I figured there might be some older things lurking. No such luck. Did I mention If they ever do a special "Hoarders" episode on doll houses I will be an excellent candidate.

It was very sad. The woman overseeing the sale was cleaning out her parents' house. I imagine they either died or are no longer able to live on their own. I didn't ask, but she told me she'd grown up in the house and was preparing to put it up for sale. It felt odd going through other people's belongings. There was just so. much. stuff. And it reminded me of how that's what we leave, I mean, in addition to offspring (perhaps) and loved ones and memories, we leave a lot, a lot of stuff. It was fascinating though. Every single room in the house was up for grabs, there were even items in the bathroom that people were buying. There must have been twenty pairs of ice skates in the basement, half a room of LPs, an entire wall of vases and crystal. There was a box of commemorative champagne glasses ("happy 25th anniversary!") that had never even been opened, along with an entire shelf of Corningware, white with the little blue flowers, that I remember someone in my family having. I took a couple of little dishes too, unable to resist.

In other news, today was a much better day in the Leo department. Erin took him to play miniature golf with his two peer buddies Jake and Adam. It has a Safari theme--a giant elephant, a fake shark pool, and fountains galore. Erin watched the boys from afar and said Leo had a blast. After golf they stopped at the deli to get takeout for lunch. When Ellie and I returned home with our garage sale booty, we dined on sandwiches and extra sour pickles and black cherry soda, al fresco. It was another crystal clear, idyllic east coast autumn day today. Leo was happy and agreeable and smiley and playful. Pfew.

Some days are hard. And some days are much, much better.

And did I mention? A new dollhouse?

Breaking Stereotypes at the Pumpkin Patch

We went to a farm today that boasted not just apples for picking but pumpkins too. And Leo's beloved hayride. There was only one problem. Leo was not all that excited or happy about much of it.

Oh sure, he had his moments of pleasure. He jumped up and down with anticipation of the approaching hayride. He smiled and cuddled on the hayride and hugged the woman who helped people down the stairs off the truck (oops). He was happy to pick apples for a while. But something was just off. He was more stubborn than usual. He didn't want to hold hands in the parking lot. He didn't want to stay on the path (you know, away from the oncoming tractors). There was much scowling about, well, pretty much everything. In short, he was just a big grump.

But wait, aren't people, especially children with Down syndrome, such "happy little beings?" That's what the geneticists at the hospital promised us the day that Leo's official karyotype came back. Hey! I want my money back, because Leo can be a downright crab.

A happy moment, but notice how he's trying to get away from me taking his picture?

It all seemed to go downhill when, on the way to the farm we had the nerve to drive past one of his favorite places, Barnes & Noble. Thus began the chant for "bookstore! bookstore!" When I explained to him that we were going to a place with hayrides! and apples! and pumpkins! He wanted none of it. He became completely focused on the bookstore and the cruelty of how we were making him go to the farm instead. And did I mention he even had his Grandma Jerry with him too?

By the time we reached the farm, a good thirty minute scenic drive through winding roads of northwestern New Jersey farm country, he was in a slightly better mood, and thankfully the bookstore seemed to have receded from his mind. But like I said, he just wasn't himself. Everything felt harder than it needed to be. Granted, that is not unusual, but today was just different.

I feel badly for Leo. As I've said before, I think much of his frustrations stem from communication issues. Then again, we knew exactly what he wanted today: the bookstore. It just wasn't in the cards. Whereas other kids get mad about not getting their way and tantrum about it, Leo seems to just hold onto it, completely unable to listen to reason. He knows what he wants and he wants it now and god help anyone who stands in his way. Transitions can be really rough.

In this case, he wanted to go to the bookstore and just was not able to shift his thinking towards the farm. But he's six years old! a not so patient little voice in me says. He shouldn't be acting this way anymore. Of course this isn't fair to Leo because sure, he's technically six, but he's not really six, in terms of his maturity level. And also? I think today Leo was just tired. He kept sitting down, like, in the middle of the path near the apple orchard. This is just not like him. But whereas another child might say "Mommy, I'm tired!" Leo just takes his frustration out on everyone else around him.

Or maybe I'm just too hard on him. I know that I can be. I'll be the first to admit I get frustrated and honestly? A little depressed by days like today. Why can't he just have fun? Roll with the punches? Why can't he listen, when asked not to run into the road. Why does everything just have to be harder? It's the DOWN SYNDROME, a little (OK, big) voice in me booms. If it weren't for the Down syndrome... Days like today leave me feeling exhausted and spent from being a wound-up ball of nerves because every. little. thing. is met with a "NO!"

I know blaming the Down syndrome is seriously unproductive. What does it accomplish? Or, sure, I could throw myself a big old pity party, but why? What's the point? So some of his behavior is related to the Down syndrome. What else is new? Not to stereotype but I think most of us in the "club" can agree: we've got some seriously stubborn people on our hands.

Of course it all evens out in the end, because as I've said here before ad nauseum, Leo is one of the most empathetic, nurturing, thoughtful people I know. He can be witty and funny and smart and affectionate. Nobody else was hugging the farm employees except Leo (and we do try to reign in the hugging but believe me he is fast).

It is what it is. But it doesn't keep me from wanting to have a little tantrum myself sometimes.

Mistakes and Miracles

Every night after bath and books, either Erin or I lie down next to Leo in his bed and stay with him until he falls asleep (and no, I didn't think I'd ever be that parent). Leo gets his covers just so, lines his pillow up perfectly straight with the fabric smoothed down, and rests his water bottle on it.

Most nights, it takes about 3.2 seconds for Leo’s breathing to become deep and slow and tinged with a slight snore—the instant indication that he is fast asleep. I’m not sure what they do with him at that school of his but the boy is wiped out. Many a night dinner is eaten with his head almost horizontal on the table, poor guy.

I don’t get up from Leo’s bed right away. First of all, Leo’s bed creaks. As do the wood floors. And the old door. So I wait a few extra minutes, until I’m absolutely certain he is down for the count. And in this time, I often gaze at my boy, the little six year old who, when he sleeps? Looks just like the newborn I held and nursed and rocked. Full little pink lips, slight open mouth posture with the little tongue that, when resting, curls inward like a spoon. I could watch him sleep for hours, there is just something about it that fills me with both peace and pride.



Maybe it’s because when Leo is awake he’s in constant motion. He’ll still allow a cuddle or a snuggle here and there (and he’s actually far cuddlier now than he used to be) but not much slows Leo down. When he’s awake, I can’t drink him in the way I can when he’s sleeping. Those little, slightly curled ears, the crease in his palms, the significant space between his big and second toe on his decidedly flat and wide feet. All of these traits are characteristics of Down syndrome. Those traits, and hypotonia (pronounced floppiness) are probably what tipped off Dr. No Tact to the extra chromosome on that insufferably humid July day six years ago. Not all people with Down syndrome share these features, mind you, but many do.

I find it fascinating, really, how people with Down syndrome can both look like each other (it’s as if they’re all distant relatives, I heard someone say once, and that’s stuck in my mind ever since) but also resemble their families. If you’ve ever been to Buddy Walk or, a child’s birthday party for instance, brimming with children with Down syndrome, you see that it’s true. They all look a little bit like their moms and dads and brothers and sisters and grandmas and grandpas, and a little bit like each other. I remember being so worried that Leo wouldn’t look like me (I know, this sounds pretty narcissistic but you can’t tell me I’m the only mom with a baby with Down syndrome who hasn’t thought this). It was one of my first fears (along with whether Leo's liver and kidneys were functioning properly and whether he was going to die) in those early dark days and it came to me when we were driving home one night from a long, somber day in the NICU.

When I was pregnant with Ellie, I wondered if she would look like her brother. For some reason I was worried they wouldn’t look like siblings.

I think it’s safe to say my fears have been put to rest. That's Leo at about a year old and that's Ellie at about age two.

Did you know that Down syndrome is the only trisomy (each cell in the body has three copies of the twenty-first chromosome) deemed “compatible with life?” That in itself is sobering. Every little bit of Leo is affected, and yet, he’s here. I look at all of Leo’s features-- funny little ears and feet, his eyes, his chubby hands, and do you know what I think? I think that it’s kind of a miracle. Twenty-five percent of fetuses with Down syndrome will either miscarry or be stillborn. Doesn’t that sort of make you stop and think?

I struggle with faith. I do. Sometimes I don’t know who to believe or what I believe in. But this much, I know. I believe in love. I believe in the religion of love and gratefulness and kindness and forgiveness. And I would like to believe in miracles, I would. I try every day to believe that everything happens for a reason, both the terrible and the wonderful. And to trust. Like Cate says (she gave me the fridge magnet too): “Everything will be OK in the end and if it’s not OK, it’s not the end.”

This week, on “Glee,” (ha! Bet you didn’t see that one coming!) one of my favorite shows and if you aren’t watching it start right now, there was a scene that I have not been able to stop thinking about. Sue Sylvester, the often cruel, hard-nosed cheer leading coach shows a softer side whenever she has a scene with her older sister Jeanie, who has Down Syndrome.

In this particular scene, Sue talks about how as a child, she would pray to god to make her sister "better" and it (obviously) didn't work. And so, she couldn’t believe in a god that wouldn’t heal her sister, the sister she admired and looked up and who was tormented by her peers for being different, for having Down syndrome.

Sue asks her sister if she believes in god and her sister responds: “God doesn’t make mistakes.”

Maybe that's too simplistic. Too easy. But the more I live this life, the more I get to know Leo and all the other children that have come into my life because of that extra little chromosome, I believe this. Life usually doesn’t work out how we plan or expect it to. The things you thought you always wanted and needed can leave you feeling empty. The things you thought you never wanted can end up being gifts.

When you think about it, we are all just one chromosome away from being “incompatible with life.” We’re all just one car accident or wonky blood cell away from disaster. Having said all this, I still think Sue's sister is right. There are no mistakes. There are certainly great challenges and disappointments and hard lessons to be learned. But there are no mistakes.

The Worst Thing That Ever Happens To You

"A Country Wedding," 1951, The Bennington Museum, Bennington, Vt., © 2007 Grandma Moses Properties Co., New York

My dad has an expression he reserves solely for moments of ridiculous self-pity: “May that be the worst thing that ever happens to you.” It’s appropriate for the many first world troubles we face. Couldn’t get a reservation at your favorite restaurant? Missed your bus? Spilled coffee on your favorite shirt?

May that be the worst thing that ever happens to you.

Trust me when I say this did not go over well when I was a teenager. It stings a little, doesn’t it? But it’s also an instant reality check (as only Yiddish expressions can be-I think that's its origin but I can't seem to find it now). And now? I get it. That’s not to say that we’re not all allowed mini tantrums about the mundane from time to time but really, I think we could all stand to use a bit more empathy in our every day lives. I hope that doesn’t come off as preachy, and I am far from perfect on this front, but it’s just been on my mind because of something that happened yesterday.

I was at the cafeteria in my building when the woman next to me became furious because the line cook apparently forgot her veggie burger. There was muttering and deep sighing and a lot of eye rolling. To be fair, maybe she was just having a bad day and this was the straw that broke it. Maybe she was diabetic or hypoglycemic or just really, really hungry. I tried to be charitable and give her the benefit of the doubt but still, her reaction did seem extreme. She was feeling well enough to berate the line cook so I really don’t think it was a medical emergency. And what did he do with that frustration? Did he shrug it off? Or did it ruin his afternoon? Did he go home and yell at his partner or kick his dog?

Honestly, there was a time when I could have been that woman, incensed by her lack of a veggie burger. For the most part, I’m wired fairly “Type A.” I can easily get impatient with myself and others if I allow myself to go there. But a funny thing has happened since Leo came into my life. I don’t really feel so impatient anymore. Or I feel the impatience, and then it just sort of rolls away from me, washes over me like a wave. I feel impatient with mean people, and people who lack patience for others but really? The coffee line is taking too long? Someone is struggling with their bag on the bus? You don’t know the whole story.

“Be kinder than necessary, for everyone you meet is fighting some kind
of battle.”—Author unknown

This refrain has become something of a mantra for me, the last few years (even if, as some sources claim, it’s an amalgamation of a quote by Ronald Reagen). Don’t get me wrong. I can still swear like a sailor when I’m driving and when Ellie calls me into her room at bedtime for the ninety-seventh time to “tell me something” I want to bang my head against the wall. I am clearly no saint. But let's just say my perspective has shifted.

It’s such a cliché to say that having a child with “special needs” makes you more sensitive, opens your eyes to a whole other world, to a slower pace. But clichés come from truth. It’s difficult to be in a hurry with Leo. He won’t allow it. Why not try out every bench and greet every person you meet from the car to the doctor’s office. You only live once, right?

“The heart breaks open...I know now that we never get over great losses; we absorb them, and they carve us into different, often kinder, creatures. Sometimes I think that the pain is what yields the solution.” —Gail Caldwell, Let’s Take the Long Way Home

My heart has broken, I think. Twice. Once when my mother died and once, however briefly, when Leo was born. And I've really tried to do what the writer and chaplain Kate Braestrup instructed: "Let it break open...love more."

I don’t mean to equate Down syndrome with a loss but for me? In the beginning, it surely felt like it. As I’ve written here before, we didn’t know that Leo had Down syndrome in advance, but learned of it in the delivery room. I have no problem admitting I grieved the loss of the baby I thought I was having. So yes, there was a loss there. The loss I’ve experienced has completely marked me, but for the better. I have a son with Down syndrome. Once I thought that was the worst thing that could ever happen to me. Now I know better.

When I was searching for the origin of that quote of my dad's, I was reminded of another gem from one of my favorites, good old Grandma Moses:

“Life is what we make it. Always has been, always will be.”

Honestly I want to staple this to my arm I love it so much. It’s just…everything.

So if you choose to make your life about tantrums from delayed veggie burgers, that’s your business. But may that be the worst thing that ever happens to you.

Drive By

I don't usually post this late in the day but I have to get in here, because I'm a person who keeps promises.

So let's see...

Insanely busy at work.

So tired my eyes are bloodshot.

Waa waa waa.

I may have eaten my weight in candy corn today. Feeling fall festive, I filled a dish with candy corn and those adorable little pumpkins (see above) and put it on my desk at work "for people who come to my office." But really, who am I kidding?

I got some new shoes. I know, I know, can you get any more Mom? But trust me, you don't want to know what size shoe I wear nor the width. Truly this is as good as it gets for me, shoe-wise. And I got them in black, don't worry. Also? Twenty dollars off with a coupon that I found through Googling. Always, always Google for a coupon. Yes it's true I'm a Never-Pay-Full-Price-Girl.

Is anybody still awake?

The used DVD of "Beauty and the Beast" that I ordered for the kids arrived in the mail today. I'm pretty sure my little Belle-obsessed Ellie-Belle is going to hyperventilate when she realizes there is an entire Belle MOVIE. Love, love, love used Amazon. Some Pig: A Charlotte's Web Picture Book should arrive any day and I can't wait to see Leo's face.

Unexpected trip tonight to the airport to pick up Grandma because Erin was running late at work (Hi Grandma Jerry!).

Kids loved the little detour. Ellie shrieked as she pointed at all the "tall buildings in the big city" (Newark). I didn't have the heart to remind her there was a just slightly larger city right across the river. Bonus: we saw three different trains and plenty of airplanes landing. Kid heaven. I love how kids can make something as simple as a trip to the airport a thing of unbridled joy.

I have so many posts in my head, there is so much I want to cover and say during this month.

Also, questions. Are there any questions out there? About anything at all? Fire away.

I promise to be more exciting tomorrow. OK I probably shouldn't say that. I hope to be more exciting tomorrow.

Whatever Gets You On The Bus

Leo’s creativity never ceases to amaze me.

But let me back up a minute. He asked to go downstairs to the playroom this morning before school and I agreed. He ate grapes and drank orange juice and played happily with his trains and Little People while I made breakfasts and lunches and a very large pot of coffee.

It started as many weekday mornings do, with Ellie calling to me from upstairs with the inquiry:

“Mommy, is there no school today?”

“Yes Belle, we have school today,” I answered.

A few minutes later Leo emerged from the basement with this ensemble:




In case you’re having a hard time making it out, it’s a stuffed snake, riding in a Build A Bear backpack (well of course it is!).

And yes, he wore this little get up on the school bus (not sure how they strapped him in but he practically skipped to the bus, so I call that a win). The bus lady’s giggle at the sight of Leo was pretty priceless too.

You know what? Whatever gets Leo on the bus, that’s what I say.

Acceptance

The other night Leo was getting undressed and ready for bed. He sat down on the edge of the bathtub and methodically placed one foot into each flannel pajama pant leg. I was sitting on the toilet (lid closed, ahem), sporting one of my favorite “night gowns,” a super soft and well-worn Buddy Walk t-shirt from back in the day—2004—the year Leo was born.

Leo looked at me and then at my shirt and said, clear as a bell:

“Buddy Walk.”

We didn’t go to the Buddy Walk this year. For whatever reason, it just didn’t happen. I did not teach him that word. Leo can read. I guess I need to accept this already but I still find it shocking.

Oh how I wish someone had told me that little moment in the bathroom would happen, back in 2004 when I held a little two month old Leo and cried through most of my first Buddy Walk, held in New York’s Central Park. I never thought I would see the day that my boy would read (or walk or talk or build hayrides or torment his future baby sister). I never thought I would see the day that I didn’t believe with all my heart, that life was over.

Sometimes (well, all of the time, really), you just have to live through the struggles to find out that it’s possible to come out the other side.

Leo's first birthday, Portland, Oregon, 2005

Letting Go

Coming down off of a quintessentially beautiful fall weekend. Truly, perfect. It's days like the last two that remind me why I put up with all the other ridiculous weather of the Northeast. But I realize you didn't come here to talk about the weather.

For the last two years, Leo has had had a pair of peer buddies that come to the house for an hour every weekend. They've grown from children to teenagers in those two shorts years as boys that age are known to do and they're now in high school. Leo looks forward to his visits from Jake and Adam with an almost pitiful urgency. He's been known to stand in the mud room for an hour before they arrive and look longingly out the window. And when they leave? Sometimes he stays there for another hour, pining for their return.

Of course Leo adores their visits. It's two boys paying attention to only him. They play basketball and wiffle ball and kick ball. They read books. They draw. They create intricate obstacle courses with chalk and slides and tunnels on the driveway.

This morning Leo asked if he could go on a walk with Jake and Adam and although my immediate reaction was HELL NO (flight risk), Erin and I discussed it and realized, well, Jake and Adam are in high school. Then there is the whole Leo-Listens-To-Others-Way-Better-Than-He-Listens-To-Me phenomenon.

And so, I took a deep breath and let go. It's really hard sometimes (no kidding).

Thankfully, I wasn't home when the boys arrived and disappeared down the street with Leo and his tricycle (Leo's idea of a "walk" is riding his trike). Good thing I wasn't home because I might not have been able to handle it. I'll admit I checked my phone a little more than usual while Ellie and I were at Costco, for texts or voicemails or missed calls, bearing some catastrophic news. I know, I know.

When I returned, Erin told me the boys said Leo was great. Stopped at every crosswalk with them (something he does not always do with me--shock). They even walked with him down an extremely busy street and he was apparently also just fine. They went to the park and he played for a while and when it was time to go he left without a fuss. The only thing he was upset about was that they couldn't stop for ice cream at the sweet little ice cream parlor at the end of our street.

Next time, I'll be sure to give the boys ice cream money.

Pot Head

The other night Leo burst into the kitchen with something to say. This has been happening more and more at our house, and it’s exciting, truly. Speech has always been Leo’s biggest delay. There’s no doubt that he understands everything (and has for a long time). But his ability to communicate his needs, or perhaps, more accurately, my ability to interpret those needs, is another story.

In other words, it looks like a big old game of charades at our house a lot of the time with Leo doing lots of hand gestures and pantomiming. Sometimes, a sentence becomes a whole physical routine. And I have to say, Leo is quite the little actor. Much of the time, he does a fantastic job of getting his point across through body and sign language (always attempting to vocalize too).

Back to the other night. Leo was very excited about the apples (sitting in a large bowl on our kitchen table from last weekend’s apple picking extravaganza). He started talking about apples (I understand that word--it's clear as a bell), apple seeds (which he is studying at school—this much I learned at Monday's Back-to-School Night). But then Leo started in on “pots.” As in, the pot on the stove that was cooking macaroni.

“Apple! Pot!” he exclaimed over and over until I had a headache. And then another phrase that I just Could. Not. Understand:"Daw-dee-Apuh-Dee." Or something close to that. He stomped his feet, not in frustration but in determination, and attempted the phrase again. Still nothing.

I feel bad admitting this, but it’s sometimes a lot of work to try to figure out what Leo is saying. It can be exhausting. At the end of a long day? The last thing I want to do is play charades. Then again, I remind myself how exhausting it must be for people to not be able to understand you fifty percent of the time, poor guy. That's when I get over myself and patiently go back in for another round of charades.

But it makes me consider how easy it is to take for granted something as simple as speech. I am still fascinated and floored by how early Ellie was able to communicate her wants, needs and most of all: her thoughts. It never ceases to amaze me that I find myself having (relatively) complex conversations with a three year old. It makes me think of a wonderful essay I read a while back (it's definitely worth checking out), a darker variation on "Welcome to Holland:" "Have a Nice Trip," by Jill Cornfield. She compares communicating with her typical son vs. her son with autism:

"I never knew how simple a child's illness could be until my younger son got into bed with me late one night, hot and crying. "My ear hurts!" he moaned. He had Motrin; we went back to sleep; we went straight to the doctor in the morning and said, "He says his ear hurts."

“Apple! Pot!” A pause. "Daw-dee-Apuh-Dee!"

Still, nothing registered for me.

And then, some synapse in my small brain clicked and for some reason, an old school, cartoon image of Johnny Appleseed (who IS Johnny Appleseed anyway and why is he so dang famous and perhaps most importantly, why does he have a pot on his head?) popped into my mind.

I looked at the pot and the apples and Leo and finally said to him hopefully:

“Johnny Appleseed?”

Leo’s face lit up into an ecstatic grin.

“Yes Mommy!” And then he went in for The Hug. He was jubilant. I got it.

Yesterday morning I emailed Leo’s teacher about another matter and gave her an abbreviated version of that story, because I'm a nerd that way and I thought she might appreciate it. Here’s how she responded:

"Yes we did learn about Johnny Appleseed and the story I read showed that he carried his cooking pot on his head. Leo called him a "pot head" and we couldn't stop laughing (though of course the students didn't know why we were laughing so much)."

Aww, my little Pot Head.

Wait, Wait, Wait...OCTOBER? AKA 31 for 21 Time Again

Grab This Button

Seems like I was just droning on and on here about how hot summer is and now here we are in October (although, hmm, it's still a little warm for my taste). ANYWAY...

October means 31 for 21! Thirty-one posts in thirty one days! However will I do it? Whatever will I say? Oh, I think I'll come up with a couple of things.

I hope you'll join me!