Full Circle or "I Want to Help People"

It took years--YEARS for me to feel safe letting Leo walk in a parking lot without holding my hand, to leave the front door unlocked with him playing in the living room or mudroom or better yet--the FRONT YARD (fence-less) unattended.

I didn't think the day would ever come that I would go to a birthday party with him and not worry the whole time about where all the entrances and exits were, or that I wouldn't wait for the call to come from school saying he had vanished, walked out of a classroom and down the street, never to be heard from again.



And now, he's helping children cross the street. Of course with some supervision. But still! Talk about Full Circle.

Leo first mentioned safety patrol back in the fall. I admit, I dropped the ball. I don't recall seeing a form or application about it come home school, but it may have. I meant to ask his teacher about it but I forgot. Last week the application arrived in his homework folder, front and center, along with a note from Mrs. W: "Leo wants to be on Safety Patrol. Please have him fill out this application and return on Monday."

OK then.

This afternoon, Leo pulled the the neon yellow Safety Patrol sash out of his backpack as though it was a gold medal from the summer games. "My dream came true!" he exclaimed, practically vibrating with joy and pride.

It's no secret Leo loves to help people. If you have as much as a hang-nail he will lovingly prepare an ice pack (he prefers ice cubes wrapped in paper towels--don't ask) and present you with an assortment of Hello Kitty, Buzz Lightyear and Tinkerbell Band-Aids. He will rub your back and prop you up on pillows and announce, "I want to help people."

Erin and I were talking this weekend about how the perfect job would be something in a nurturing field--who knows-maybe a hospital or nursing home. As long as he's happy, and fulfilled--that's all we care about.

Safety Patrol seems like a pretty great start.

It Gets Better: Bounce House, ENT and Primal Screaming Edition

A few rainy weekends ago, Leo and Ellie were blessedly invited to a birthday party at one of those bounce places. I'm not kidding when I say I was GRATEFUL for that party. At 3:47 p.m., after three hours of "STOP IT LEO" and "GET OUTTA MY ROOM ELLIE!" and the ensuing tears and shoves, I was positively ecstatic to drive thirty minutes in a downpour so they could jump and bounce and slide and get out of the house and out of my hair. The twins stayed home with Erin and I got to drink Diet Coke and chat with some old friends from Leo's preschool days (and yes, big kid birthday parties qualify as "Me Time" these days).

Ellie and Leo prepare to mount the "velcro wall."

After about an hour and fifteen minutes, the children (a mixture of nine and ten year olds with Down syndrome and their typical siblings) were unequivocally All Bounced Out. Parents and children filed into the party room across the hall where cheese pizza slices were impeccably arranged on "Despicable Me" plates. All twenty little pink faced people gratefully sipped pink lemonade out of Minion adorned cups while music from various Disney movies played from some far away iPod. When "Let it Go" came on, Leo had to stand up and step away from his pizza to belt out the lyrics (complete with hand gestures). No one batted an eye or even seemed to notice.

As I sat and watched this group of children, most of whom I've known since Leo was three years old (!) it hit me. I remember attending this particular birthday boy's parties back when I had to cut Leo's pizza into bite sized pieces. When I had to watch him every single second and find all the exits as soon as we arrived, to make sure he didn't find one. When I had Ellie, a squirmy toddler in tow and I dreaded attending birthday parties with the two of them because it was so hard to keep track of Leo and Ellie at the same time. And what if I had to change a dirty diaper? That would mean trying to pry a transition-challenged Leo from doing something he loved. In other words? Nightmare.

To say nothing of his escapist tendencies at that age. All those tunnels and nooks and crannies used to practically give me angina. He was a runner. And a hider. And it was the opposite of fun (for me, at least).

But at this recent bounce party I found myself lost in conversation several times. Every once in a while I would look up and think--Huh. I guess I should check on Leo. And Ellie. And I did. And they were fine. But I didn't have heart palpitations when I couldn't spot Leo immediately and I didn't have to tear pizza into bite sized pieces and I didn't have to chase a toddler down a hall. Not even once.



A few weeks after the party, I took Leo to his annual appointment with the ENT (ear, nose and throat doctor). He got a clean bill of health and it turns out he doesn't need his allergy medication anymore. Leo was a little wary at first and none too thrilled with the exam (who likes having little instruments stuck in their ears?), but he cooperated just fine, didn't cry or kick me (or the doctor-hey, it's happened!) in the shins or the stomach. There were a tense few seconds when I didn't think he'd sit for the hearing test (why oh why don't they employ more kid-friendly audiologists I will NEVER UNDERSTAND) but we rallied and he did it and we can check off that little box (and by the way, Leo's hearing is just fine).

Speaking of angina, I practically have PTSD from all those years of traumatic ENT appointments. The second I'm in that waiting room it all comes crashing back. The flailing. The tears. But the fact that Leo now cooperates and I don't have to chase him around the waiting room or drag him kicking and screaming from the play area to the exam room or hold him down while he wails and stiffens and punches? I will never not be grateful that it is So Much Better. Now.



There are a multitude of things that are helpful and remarkable about having a multitude of children, one of which being that as they get older, they give you (even more dramatically than one or two might, I think) the gift of perspective. As a parent, when things are hard, it's so easy to feel stuck and frustrated, to think, It's ALWAYS Going To Be This Way. I absolutely love the ages Leo and Ellie are right now. It feels kind of perfect. Aside from the fact that the two of them fight with each other quite a bit (talk about typical behavior--I should be relieved, right?), they are genuinely fun to be with. We have interesting conversations. We laugh. I'm never worried one of them is going to take off in public and if I can't see one of them as they round the corner of an aisle at the store, I don't get that sick, poison-in-my-veins feeling that I used to get when I lost sight of Leo, or that I get now when Lucy wanders off from me at checkout line at Target when I'm momentarily distracted trying to activate my "Cartwheel" app (Ugh and true story).

Speaking of Lucy, I've written here about our, shall we say, challenges with her, of late. Or perhaps I should say they are my challenges with her. At any rate, her latest is trick is screaming when she doesn't get what she wants. Sounds simple, right?

Well, it's not. Because I mean, S-C-R-E-A-M-I-N-G. I know this is something that almost-three-year olds do. I've just never had an almost three year old that's done it.

When Lucy doesn't get what she wants (not every time, but often enough) she digs deep into her tiny body and, like a cornered animal, out comes something from, well, another world. Harry reacts by covering one ear, turning his head and whimpering. Leo covers both ears and sometimes screams back (yeah, that's fun). Ellie raises her shoulders to her ears and says, "Oh Lucy." I...do the best I can, but admittedly have been known to react less gracefully than I could.



Not allowed to wash her hands at the kitchen sink (which isn't as simple as it sounds--it involves moving the rug in front of the sink, scraping the kitchen chair across the room)? SCREAM!!! Denied chocolate animal cookies at 6:45 a.m.? SCREAM!!! Asked pleasantly to Please put her shoes on so we can go pick Ellie up from school? SCREAM!!!

But. I know from seeing it over and over again in Leo and Ellie that this too shall pass (which remains one of my favorite parenting tips). As quickly as Lucy discovered this talent is as quickly as it will disappear (though perhaps not as swiftly as we'd all like it to).

And I just know that Lucy and I have an endless number of carefree bounce house parties in our future.

Mr. Independent

Leo in Times Square a few weeks ago, when he came to work with me for the day. 

I still remember my first thought three years ago this month, laying on the exam table and hearing the words "You have twins."

OK, maybe my first thought was Holy Crap.

But for sure my second thought was Leo: How would we ever be able to give Leo all the attention he needed with our energies further dispersed amongst two more children?

And since their arrival almost two and half years ago, there have certainly been times I've felt overwhelmed (HELLO, understatement) and had moments when I would have liked to have been a bit more, how shall I put it? Present for Leo, to have been able to give him a little more undivided attention with homework or I would have preferred to keep a firmer grip on his hand in a busy parking lot, as opposed to a giant double stroller.

But if there have been blessings in all of this, in the way things have turned out for our little family (there have certainly been many of them), it's that having many small children and having my attention, yes, often diverted and divided has forced everyone to take just a little more responsibility, and in turn, for me to trust my bigger kids to step up to the plate, to rise to the occasion, if you will.

And that's just what happened at Costco on Saturday morning. Leo stepped forward, and I stepped back.

There was our checker, dutifully ringing up our items, there was Harry, thirty minutes late for his nap and flirting with crankiness and there was Leo, asking for a smoothie.

A quick assessment of the situation led me to the following realizations:

A) We were in line (having our items rung up) directly across from the Costco food court.
B) There was NO LINE at said food court. (Costco regulars will recognize the enormity of this).

That's when I handed Leo a $5 bill and sent him on his way. If it had just been Leo there, I have no doubt that I wouldn't not have allowed him to go off on his "own." But Harry would not have enjoyed waiting in yet another line and I still had to get everyone out to the car and the groceries loaded up, to say nothing of the fifteen minute drive home.

I could see Leo the whole time-he never left my line of vision. He marched up to the counter and placed his order. Did the server pause to clarify the order? Have a hard time understanding Leo? Perhaps. I couldn't really tell. All I know is a few moments later, Leo was presented with one of his beloved "very berry" smoothies and a small cup full of change (the thoughtful server had given it to him in a little cup to prevent Leo from spilling it). I grew a little worried when I watched Leo move over to the straw/napkins/flatware area-he seemed to be struggling a bit with the straw dispenser. But he  rallied and the next thing I knew he stuck the straw in his smoothie, took a contented sip and was on his way, gliding back to me with an enormous grin, practically vibrating with pride.

It was a little thing, but I was so very proud of him.

Ways of Seeing

One of the things I've always been fascinated by is the way Leo looks at things in his world. I'll never forget the time he was about four years old, when he leaned over and showed me his half-eaten cheese quesadilla. "Steps!" he declared. At first I didn't know what he was talking about. But I looked at his quesadilla and sure enough, the little bites he'd taken had created a pattern that looked indeed, like steps.

Last night before bedtime, Leo was standing in front of the open refrigerator, getting ready for his nightly pre-bed glass of seltzer (what is it with my boys and their seltzer fixations?).

"MOMMY! The seltzer! It looks like Mickey Mouse!"


The three bottles of seltzer are to the right of Leo, with the silver caps. I don't know about you, but I can definitely see Mickey Mouse there. Of course, I needed Leo to point it out.

The other day I set out a package of juice boxes for Leo to put away in the refrigerator--it's one of his "jobs."

"Mercury, Venus, Earth, Mars, Jupiter, Saturn, Uranus and Neptune," Leo chanted.

There are eight juice boxes, in a package, just like there are eight planets in the solar system. Leo had lined up all the juice boxes on the shelf inside the refrigerator perfectly. Planets.

"NOT Pluto!" (Leo is very adamant about reminding us this whenever he gets a chance.)



Granted, this example of juice boxes as planets was a little harder for me to "see."

There was a time when I would have given anything to know what was going on inside Leo's head. As Leo's language has exploded over the last few years, I don't have to long to know what' he's thinking, the way I used to (now, the struggle isn't to get him to speak, it's often, to the frustration of everyone involved, to figure out what he's saying).

But it's still evident to me, through Mickey Mouse seltzer bottles and solar system juice boxes, that Leo's mind works in a very unique way and he sees his world in a way unlike others do. Unlike anyone I've known before, really.

Love, Leo and 100 Days

Yes, it was Valentine's Weekend 'round these parts.

I wrote the list of children in Leo's class (I imagine he could have done this himself if we'd had more time). When I presented him with the list of names he was alarmed.

"Leo! What about Leo?" he asked. He reached for the paper and immediately added his own name.

I reminded him that you don't give a valentine to yourself, that those were the names of the people he was giving valentines TO.

"Oh!" Leo laughed. He then erased his name and wrote his signature sign-off for Valentine's Day. The standard "from" just won't do, oh no. For him it's simple:

"Love, Leo."

We also completed Leo's "100 Days Project." The assignment was to compile a poster of 100 things to commemorate 100 days of school which, barring any snow days (cough, cough, mildest winter ever) is slated to fall on February 16.

Here's the illustration and title page. I was pretty impressed to learn that Leo knows about apostrophes. You'll notice how in many pictures where he's writing he's leaning over. His OT often has him lay on his stomach when he colors and writes as it helps him keep himself steady.

In other Leo news, his speech has taken an interesting turn. He seems to be in touch with the Yiddish roots that comprise fifty percent of his gene pool and is now pronouncing many of his hard "k" endings with a "huch" sound. It's hard to explain in writing here but the Yiddish speakers in the crowd know what I'm talking about. "Look" sounds like "luch." In all seriousness, I think his speech therapists are really drilling into him the importance of crisp word endings as he will often drop the endings of words ("yeah" instead of "yes"--though "yes" has recently become a Sean Connery kind of yes, more like "yesshhh." Hey, I'll take it.

Also, school seems to have fully indoctrinated him to the definition of Bullies. Now, if anyone is remotely mean to Leo he immediately accuses them of being a bully. Probably no shock to learn that Ellie is called a bully at least a dozen times a day.

Hair Today: Sweet Victories

Before...

Going...

Still going...

Pause to admire handsomeness...

And, gone!

Long time readers of this blog realize the enormity of these images.

Leo got a haircut. And he didn't freak out. He didn't cry. We didn't have to hold him down. I don't have bruised shins. I didn't cry (well, I actually did, but they were tears of joy and pride). I could go on and on.

Still a little confident on the heels of a recent visit to the pediatrician wherein Leo allowed the doctor to examine his ears (the other historical source of hysteria), we decided to revisit the notion of a real haircut. Obviously we've trimmed it here and there as he'd allow (usually in front of a piece of cake with him holding an iPhone while "America's Funniest Home Videos" played in the background, anything to quell Leo's haircutting demons). I used to joke that perhaps Leo was some kind of medical phenomenon, that he had nerve endings at the tip of his hair, he would get that upset and there was just no talking reason to him.

But, try, try again, fail, try again, right? Give kids/babies the chance to surprise you and nothing is permanent (two of my favorite pieces of parenting advice).

All of that, and Leo's hair was starting to look downright silly.

I should also credit Steve Jobs in my little Thank You speech. Getting to use the iPad (Super Stickman Golf to be exact) was the deciding factor in my opinion, that finally allowed Leo to relax enough and be distracted, something no amount of cake or DVDs could ever offer.

It's like almost everything with Leo. Everything has taken longer, been a long time coming (sitting up, crawling, walking, talking). But it all happened. It's all happening. He just does it in his own time. And certain things just don't come easy to him.

And that's what makes these little seemingly simple victories (a haircut, yes, a haircut made me cry happy tears today) that much sweeter.

Change of Plans

Oh Leo. That boy just slays me. I go on and on about his speech and how worried I am about his intelligibility but he I have to say, he is doing great. We're suddenly having these conversations. And he's cracking jokes. And I'm having these little visions of what he's going to be like as a young adult.

This boy drives me crazy sometimes but he happens to be one of the most interesting, creative people I know. See above. Note the snowmen on the slide. He's wild about those snowmen, which I bought pre-kids--I know, I know, They're Hallmark: Don't Judge-- (and little did I know I'd someday have a little boy who loved singing Christmas toys year-round). He likes to "place" them where he's playing. Before I snapped this shot, the snowmen were on the patio table across from him. So the snowmen could see Leo? So he could see them? Who knows. Sometimes I find the snowmen sitting next to him on the couch when he's drawing, or facing him when he's playing Legos on the living room rug.

And I've decided a couple of things about Leo. Sure he takes a little longer to do certain things. To wit: This morning I sent him to the pantry to get more paper towels and he he took so long I'm pretty sure I could have gone to the store and bought more paper towels. No, he's not your "typical" seven and a half year old. But he is smart. Wise. Incredibly sensitive. The only thing "wrong" with him? He is the most stubborn person I have ever met. Once he makes a decision about something, look out. It's a long, sometimes painful (maddening, infuriating) road to convince him otherwise (it could be anything from wanting cheese crackers when there are none to refusing to get on the school bus in the morning).

Interestingly enough, the recent school evaluation (conducted every three years to determine proper placement/eligibility) we've been waiting for had a similar finding (except for the maddening, infuriatingly stubborn part). Leo's reading close to grade level. His receptive language is that of an eleven-year-old. And we're in an interesting little predicament now because for the past two and a half years, Leo has spent the bulk of his day in a self-contained classroom for "mildly cognitively delayed."

And now? Seems he's not technically cognitively delayed. Perhaps learning disabled or language delayed (I'd argue he has articulation issues vs. delays but whatever). The point is, Leo's "team" (teacher, therapists, school psychologist) are faced with something they say they've never really seen before. And they are working to create a new program for Leo. It's looking like it will probably be a combo of a typical classroom, some time in his present ("cognitive delayed") class and some time in the "language and learning delays" room.

And for the first time in the history of meetings with Leo's team, when I uttered the words "full inclusion," I was met with smiles and nods, rather than shrugs and "we'll have to see how it goes."

Things are about to get even more interesting.

Robot, by Leo

One of the things I love about Leo is his very active imagination. Here he is building a "robot." His hayride days appear to be over, but he's very good at making structures out of found objects. Just look at his focus, his concentration. There's great attention to detail too. That orange safety cone? It was meticulously filled with leaves. The ghost was a last minute addition, after Erin and Ellie came home with Halloween decorations.

Unadulterated Joy

Kind of cheating today with a picture post.

This photo was taken by my friend, the wonderful photographer Stephanie Willson (look her up if you're in the Tampa area!). She came to New Jersey in June, two weeks after the babies were born, all the way from Florida to do a newborn shoot. I will always be very grateful for this (and come to think of it I should post some of those pictures sometime).

But she also took this wonderful picture of Leo, which in my mind, perfectly sums up his spirit. Most every day a joyful display like this comes out, and like most kids, it doesn't take much. But I think it's fair to say that Leo's appreciation of the every day goes way above most other people. A new tennis ball to throw to the dog, a favorite brand of cheese crackers to snack on while grocery shopping with Mommy, and yes, a new pool for the backyard (see above). Leo seems to feel things more intensely than anyone else I've ever known (and this goes for happiness as well as sadness). Is it that mysterious extra chromosome? Who knows. But as my mom would have said, when he is good, he is very, very good. Of course he can drive you bonkers when he gets in one of his moods, but that smile? That laugh? That jumping up and down display of joy when things are going his way?

Sometimes, you can try really hard to be in a bad mood around Leo. But he just won't let you.

Getting to Know You and Can You Feel the Love?

Tiny personalities are emerging.

Of course it's a little early to make sweeping generalizations but so far?

Harry:
Is definitely the more challenging baby (sorry buddy). He loves eating (he easily nurses three times as much as Lucy does), is a snuggle bug (adores laying on a warm chest or a good good shoulder or being carried around in the crook of your arm). Has a serious, almost "old soul" look about him. So far my favorite description has likened him to a Borscht belt comedian, circa 1950 (thank you for that, Renee). He's also a fan of creating lots and lots of laundry for his Mommy, though the spit-up situation has gotten much better. But when he's hungry? He has no shame and it's as if he's never eaten. He will gladly try to nurse your shoulder or your neck. Or Lucy's head.

Lucy:
If Lucy had an anthem it would be Bob Marley's "Three Little Birds." She is the original Chill Baby. If Lucy was your first baby? You'd say, what's the fuss? This baby thing is No Big Deal and you'd have a dozen more. She eats, she looks around the room, she makes adorable little faces with her big E.T. eyes, she forms a little "O" with her delicate little mouth, and then you put her in her bouncy chair and she falls back asleep. For hours. In her sleep she slowly and gracefully kicks one of her dainty little legs in the air as if in her dreams, she's riding a miniature, newborn bike.

Leo and Ellie continue to be model older siblings. The biggest issue so far is that they seem to LOVE THE BABIES TOO MUCH.

I know. I really need to be quiet, right?

Ellie:
Accepted that I can't spend three hours putting her to bed every night. She's embraced the new routine. She bolts to get me a diaper when she sees me rounding the corner to the changing table--"Mommy, do you need me to get a diaper?"
She loves to cover the babies with blankets and help rock the bouncy chairs (which she learned to do via Grandma Jerry--you do it with two fingers). Last night, when Erin went to lie down with Leo and Ellie waited patiently in her room for her turn at books with Mama, Ellie heard crying coming from our bedroom where I was alone with the babies, trying to organize a tandem nursing session. She opened the door and quietly asked, "Mommy are you doing OK with the babies? Are you having fun?"

Leo:
Has embraced the crying. He no longer leaves the room when the screeching duo chorus begins. He just looks at the babies with concern and reminds me "Babies crying! Babies eat, Mommy!" (By the way, did you know that Babies "eat boobs?") (Leo said it, not me.) He's also a big fan of kissing and hugging and loving on the babies, sometimes a little too much (again, I know, I need to be quiet since so far neither big kid has voiced one single frustration about the babies). The worst thing you can say about Leo and the babies? He feels compelled to kiss their hands and face, precisely where I ask him not to kiss.

Such problems.

Bedtime Chat With Leo

Last night, after we finished books, Leo was getting situated in his bed. As he does any night that I put him to bed, he pulled up my shirt to say goodnight to the babies.

"Goodnight baby, goodnight baby."

The What to Name One of the Babies discussion is still in full force, so I ran two options by Leo. His ability to pronounce the names is something we are considering (it never occurred to me with Ellie although he can say her name just fine).

"How about [Insert Baby A's Prospective Name] or [Insert Baby A's Other Prospective Name]? I asked Leo.

He studied my face for a moment, then broke into a huge grin.

"Rudolph!" He announced, with absolute certainty.

Rudolph, as you might not be shocked to hear, is not one of the names in the running. Rather, Rudolph is the word/name that (blessedly) has replaced "Poopy Head" which, for a while there, Leo was calling anyone and anything, because it was sure to get a rise out of people (Ellie is absolutely lightening quick at tattling "Leo said a bad word!")

"Hmm, I don't know about Rudolph," I said. I repeated the names to Leo and he again chimed in with good old Rudolph.

"You're silly," I said, ruffling his thick sandy hair. Leo rested his head on his purple unicorn Pillow Pet (don't ask), and then shot up again, reached out and felt my stomach.

"When are the babies coming?" he asked.

"One more month, I answered.

"One more month?" Leo repeated, wearing the same frustration both children do when they are told that no, the babies are not coming today or tonight (at least, I hope not).

And then, another big grin from Leo: "One baby, two baby, Happy Mother's Day!"

Truer words have not been spoken, Leo.

To Be Filed Under I Should be Blogging More With All This Time: Catch Up Edition

I have a lot of time on my hands. Pretty soon there will be no time. I should be blogging more. I'm settling into this staying home thing. I'm making real dinners (nothing crazy, I promise) and homemade strawberry shortcake (a huge hit, at least, the whipped cream was). It's funny, the little things that decrease one's stress. It's such a relief to know that I can just leave dinner dishes in the sink and realize I can wash them, at my leisure, in the morning. Or in the afternoon! Or whenever!

As thrilling as all that domestic talk is, I guess I don't have all that much to say. I haven't been writing because, well, does anyone want to hear me whine about feeling exhausted, not sleeping, being suddenly very puffy and itchy? The good news is, I successfully got my rings off, with a little help from Erin, baker's spray and olive oil. I waited too long and it hurt and not to be dramatic but it would liken it to a teeny, tiny reminder of the fun of childbirth.

You may also be interested to know that you can watch "Thirtysomething" on Netflix's instantly streaming shows. I have grand plans for most days but have found that one errand in the morning (the grocery or the doctor) pretty much does me in. So, "Thirtysomething" on Netflix it is.

As long as I'm sitting on the couch, I feel great! Albeit, a little sleepy.

32 weeks, six days, today.

I had a doctor's appointment today. Baby B is sitting on Baby A's head, but I imagine they are pretty used to that kind of infringement. Do twins grow up to be more tolerant people, I wonder? In other news, they both have hair! And are estimated at 5.5 and 5.8 pounds. I'm told this is large for this point in the pregnancy, but I hope they have plenty of time to get bigger. I've never had a baby under eight pounds and anything smaller scares me. Oh, my doctor also told me today that I was "born to grow twins." So, maybe I have a new career direction?

In other big news, Ruby (our dog) got a haircut. Note the pink bows (yes we like to humiliate our dog). Please, however, ignore the recycling in the background. This photo was taken in the mudroom which Erin just painted. I am in love with the color, which is the same color we've decided to paint the babies' room. Hmm, do you think Leo loves his dog?

Ellie had her ballet recital last weekend. It was adorable as expected. Not that we're biased.




I was good! I only cried a little.

The other morning Leo woke up a little early before school, early enough to have time to draw. He's into houses right now. He drew the above and I was quite impressed to note that he'd included, without instruction or direction, his address. I have no idea if he just noticed this himself or if he's learning it at school. Either way, I'm proud. By the way, he's sticking his tongue out here, on purpose. Only because I told him not to.

On IEPs, Memories and Effing Cancer

Please excuse jelly face.

Today was Leo’s IEP meeting. It went very well. He’s doing great, making progress in all subjects. He can read 110 words (!) and especially enjoys science and social studies. His handwriting is improving (though I've been proud of it for a long time) and he consistently scores 100 percent on his spelling tests almost every week (my boy!). He goes to the bathroom independently and his behavior (which has never been a problem at school, thankfully) is even better than it was last year.

The only real issue is he’s been more “fidgety” lately, sometimes having a hard time sitting still and staying in his chair. The funny thing is, he still pays attention and participates, he just has to move around (play with his fingers, wiggle in his seat or stand next to it) while doing so. His teacher said she thought the long winter and lack of outdoor recesses may be contributing to this. In any case, they put a rubber cushion on his chair which seems to be helping to keep him more stationary. Hopefully spring will come SOMEDAY and these poor children will get an outdoor recess before the last day of school!

His speech is coming along. He has longer, more complex sentences and is talking a ton. But still. He’s very hard to understand. I’d be lying if I said this didn’t concern me. I know that all kids (especially kids with DS) excel in certain areas and have bigger struggles in others and speech has always been Leo’s biggest hurdle (and he certainly has a long list of successes for which I am so grateful and proud). But we were at an event on Sunday with many of Leo’s old classmates from his former school (all kids with Down syndrome) and I was honestly shocked by how amazing some of the speech was, how distinct and clear and, well, “normal” sounding. I’m not sad and I’m not comparing, it is what it is. It was just so apparent.

I feel bad for Leo because he has SO much to say and he’s such a funny, smart guy. I want the whole world to be able to understand him and get to know him. I should add that he in no way seems to let any of this get him down. He certainly has a way of getting his point across. And you should hear Ellie and his looooong debates and discussions about all sorts of topics, from princesses to pirate ships.

On a lighter note: Leo’s teacher and therapists all remarked on what an empathic guy he is. His speech therapist noted his “strong moral compass.” He’s always the first to give a pat on the back or stroke on the cheek when someone isn’t feeling well. This week the school is doing a unit on bullying and manners which involved a theater group coming in to perform skits portraying people being "nice" and "mean." Apparently Leo was outraged at some of the behavior portrayed in the skits. He was scowling and glaring at the “mean” actors and shaking his head with disappointment and disapproval.

The meeting came to end and Leo’s classmates began to arrive (Leo skipped the bus this morning and came with me, working on the computer across the room while we had the meeting). The announcements began and Leo was absolutely tickled that I was there to recite the “Pledge of Allegiance” with his class (he even helped me put my hand to my heart, in case I’d forgotten). More announcements followed after the “Pledge,” including a reminder that there would be a moment of silence for the director of special education, who died yesterday.

I was stunned. I knew she’d been ill (cancer). I knew she’d had surgery and taken a medical leave, but she came back. I had no idea how sick she had been. She was a wonderful woman. Full of life and humor—a “big” personality. She helped me a lot last year when I was having some issues with Leo’s transportation. She was a real advocate for the kids too. During a time of huge budget cuts for our town's education services, she assured me everything would stay the same for Leo and the kids in his program. And every time I talked to her she would tell me how much she and everyone else loved Leo and how “the last time she saw him he gave her a big hug.”

She was 54.

I just read her “legacy” book from the Newark Star Ledger, which followed her obituary. This is my favorite entry so far:

“Betty I know you are up in heaven where the onion dip bowl is always filled and the Raiders are on the televison 24/7. You had such a gift for making life more festive. Peace be with you old friend.”-- Judy Dunn

Every time I hear of someone dying of cancer (especially someone relatively young), of course I think of my mom. And my mom certainly pops into my mind, a little flash, I think, just about every time I go to Leo’s school. It’s a combination of things, the first being that I sometimes still can’t believe I’m someone’s mom, that I’m like, responsible for someone. Then there’s the place: an elementary school, that was my mom’s domain, for over fifteen years. She wasn’t a born teacher but she came to like certain aspects of the profession, I think. And at the very least she loved her kids (well, most of them). And one day she was teaching and doing lesson plans and correcting journals and the next day she called in sick and she never went back to school. She never got to say goodbye to her kids. And it will always break my heart to think of that.

I remember sitting in my little apartment on the upper west side of New York City on a cold March day in 2000. My mom, in a rare, unguarded moment (she was very strong and stoic throughout her illness) was crying to me over the phone, thousands of miles away in Oregon.

“I’m just afraid I’m never going to get to go back ,” she said, between tears. “That I’ll never get to say goodbye to my class.”

I dismissed that talk as “silly”—that of course she would see them. What else could I say? I didn't want what she said to come true.

There is a book that was given to my step dad and me after she died, a three ring binder of sympathy letters and cards and drawings by what seemed like hundreds of elementary school children. There were also notes and letters from her fellow teachers. I could hardly look at it, at the time. But it’s something I know I’ll want to have, someday.

I think when I’m pregnant I push the thoughts of her away more. It’s too much. I just can’t go there. My mom, who never thought she would be a grandma, on the cusp of being a grandmother of four. I Just. Can’t. Think about it.

I just hope Ms. Maddalena had a chance to say goodbye.

Sometimes

Sometimes, the best place to be, is next to the fire, with a good book.
This particular book, In a People House, was apparently sooo good, Leo had to read it twice.

Have I mentioned lately how much I love this boy?

Of Course He Was

Don’t ask me what possessed me to take the kids to the grocery store the afternoon of New Year’s Eve after a fun but exhausting play date. Oh, right. We (OK, I) needed ingredients for Thai salad rolls, our annual New Year’s Eve dinner (after the kids go to bed).

We stopped in the toothbrush aisle, because I promised Leo a new one after I made the disastrous mistake of putting a non-electric Spiderman one in his stocking at Christmas (Ellie got an electric Arial toothbrush and to say Leo was envious would be an understatement).

“You can have SpongeBob (yuck, please don’t get SpongeBob I willed Leo, subliminally), Dora and Diego, Transformers or Pokemon,” I rattled off the bevy of choices and presented all four to Leo, who was sitting patiently in the front seat of the grocery cart.

“Princess!” Leo announced.

“They don’t have Princess, Bub,” I said. I again reiterated the choices. He may have been a bit overwhelmed. I find having two options is ideal but he could see there were more than two options.

“Leo, which one do you want? Do you want this one or this one or…” Ellie was chattering away as she is apt to do, crouched down at the bottom rung of the kiddie toothbrush display. “Oh Mommy can I get the Barbie one?”

“No you can’t get the Barbie one,” I answered, probably a little more impatiently than I needed to. Ellie just got a new toothbrush exactly a week ago. This was Leo’s moment. Also, did I mention it was New Year’s Eve at the grocery store? And that people are cranky on New Year’s Eve at the grocery store?

“Come on Leo, you need to make a decision,” I said. I’m usually pretty patient with him. I find that the more pressure he gets to “go faster,” the more he freezes up. He will do most anything I ask of him, in his own time. Which is fine, except we don’t always have our own time. And that particular afternoon, I was tired and losing it and it was the end of the shopping trip and I’d already had to ploy Ellie to even cooperate with a trip to the store with the dreaded Scooby-Doo Fruit Snacks (don’t ask).

“Leo?”

He was studying the brushes, still. And then he pointed to his head and said something I couldn’t quite make out.

“What did you say Leo?”

He said it again. I still couldn’t figure it out. And then, it was like the proverbial light bulb appeared over my head: Leo said, “I’m thinking.”

And with that, he very decisively reached out and selected the purple and green Dora and Diego toothbrush, a huge, satisfied grin on his face.

He was thinking. Of course he was. Leo was thinking.

First Play and Much More

I think the picture pretty much says it all.

But because I am who I am, I have to say just a little bit more about taking Leo to see his first play this past weekend, “Charlotte’s Web." Of course, it didn’t hurt that Charlotte’s Web just happens to be one of my absolute favorite books of all time (I actually consider it to be one of the few perfect books). How can you argue with a line like this one:

"You have been my friend. That in itself is a tremendous thing. I wove my webs for you because I liked you. After all, what's a life, anyway? We're born, we live a little while, we die. A spider's life can't help being something of a mess, with all this trapping and eating flies. By helping you, perhaps I was trying to lift up my life a trifle. Heaven knows anyone's life can stand a little of that."

When the house lights went down, Leo took my arm for a minute, not sure what to expect, I suppose. When the show started, and the actors began speaking (and there were puppets!), Leo crossed his legs, leaned forward, and was instantly hooked.

Aside from laughing and clapping at all the right places, the only sound Leo made was when the first web with the words “Some Pig” appeared. “Some pig!” he announced, decidedly not whispering. He leaned over to the unsuspecting man next to him, pointed at the web and said “Some pig!” The patient man (a dad) caught my eye and smiled at me, and then Leo. I drew the line when Leo crouched down and attempted to tap on the shoulder of the woman in front of us (he apparently wanted to tell her about “Some Pig!” too.

Unlike “Some Pig,” Leo couldn’t read “Radiant” or “Humble,” the next words to appear on Charlotte’s Web. I assure you that when he leaned over to ask me “What’s that say?” he immediately attempted to tell Dad Next To Us about Radiant and Humble. Luckily, patience mostly abounded that day and Leo’s neighbor indulged him with a sweet nod.

I grew up going to the theater. Nothing fancy, just community theater, shows like “Peter Pan,” “The Fantasticks,” and “West Side Story.” And who could forget the traveling version of “Les Miserables” that captivated me my entire senior year of high school (nerd alert). I think I wore the tape on that cassette soundtrack thin.

And because I am who I am, of course there were [happy] tears rolling down my cheeks at the end of Sunday's matinee of "Charlotte's Web," when the final, utterly simple yet heartbreaking line was spoken:

"It is not often that someone comes along who is a true friend and a good writer. Charlotte was both."

It's OK, you can call me a sap, but it was almost TOO much. My favorite book. Live theater. And my beautiful, sweet boy next to me, loving the whole thing.

Early Gifts

I arrived at the holiday lunch yesterday at Leo’s school (the flyer instructed us all to “dress to impress”) surprised to see Leo, walking the buffet line, holding his little tray, all by himself.

This photo is a bit Where’s Waldo? (and apologies for the horrific composition and that woman's GIANT hand) but I promise you that Leo is there. He is earnestly surveying the spread (upholding the family names, this boy is serious about his food).

He went on to have two helpings of stuffed shells, and kept one hand on my leg for most of the hour (except for when I took this picture, of course).

It was such a nice time. These little moments alone with my boy just mean so much. And spending time with him at school is even more special. He’s so appreciative and excited did I mention, grown up? I just love little glimpses of him in his “other life.” He’s come so far this year. The sentences, the reading, (I made the mistake of leaving a Toys R Us bag out in full view and note to self: can’t do that anymore because oops! My kid can read!). To say nothing of how much he's matured in his behavior, following directions and listening and acting less impulsively.

Leo kept offering me some of his food though I politely declined. Every few minutes he would look around at his friends and teacher and aides and say, “Mommy’s here!” We sat by good buddy Terry (Leo talks about him often) and Terry kept leaning over to me and saying “Leo’s mom!” as if he too, couldn’t quite believe I was there.

Unfortunately I missed the school holiday sing-a-long this morning. But I got a little preview last night on the drive home from aftercare, when Leo busted out with “Feliz Navidad,” singing along with the radio. He knows all the words (this was news to me).

Merry Christmas, indeed.

Humpty, The Corrections and a Monday List

Well here we are again. Another week down.

Things continue to be busy and exhausting, but good.

-Leo has moved on from “Hey Diddle Diddle” to “Humpty Dumpty.” When he says the latter, it comes out sounding something like Duddy Duddy. Ask me how long it took me to figure that one out. I had a realization the other day though. Leo continues to have the patience of a saint with me when I can’t understand him. And when I do finally “get it?” It’s like Christmas and a birthday and kittens and puppies all at once. It’s just the best feeling ever, for him and for me. It’s like every little accomplishment or milestone when it comes to Leo: they are celebrations and never taken for granted.

-Ellie had her winter concert last week. It was as adorable as expected and no surprise, required tissues (for me, not her). The little class of three year olds marched in all wearing matching Santa hats. Ellie wore her exquisite red velvet dress with the faux white fur color that looks straight out of “White Christmas,” courtesy of Grandma Jerry (seriously, I wish I could find one in my size). A few kids broke from the line to hug parents in the audience but Ellie remained stoic, opting instead, to exclaim “Miss Jamie! [her teacher] My mommy is here!”

-I’ve decided that living with a three year old is an exercise in constantly being told you are wrong. Because according to Ellie, it’s not tuna, it’s tuna fish. The stuffed animal I gave her after she asked for him at bedtime the other night, he’s a bear, not a lamb [she was right, I confess]. And don't forget to use an absolutely exasperated tone that sounds more like thirteen year old than three year old. Thankfully, Ellie still tells me that she is “tendering” to do something. I still vow to never correct her and tell her it’s “pretending.” And I might cry when she stops saying “tendering” because I find it so adorable.

-On a positive note, Ellie is suddenly Little Miss Compliment. She likes my hair (when worn down). She likes my scarf and my glasses and my new boots. She likes Erin’s headband and Miss Jamie’s sequined skirt. It makes me smile.

-Leo had a note in his backpack about a new program at school wherein “Finn” the dog (a Labrador) will visit various classes and the children will practice reading to him. I love this idea and can’t wait to hear how it turns out. I promise to report back.

-I am still in denial about all the holiday baking I have to do. This weekend is going to have to be IT. Where are my elves when I need them?

On Joy

The highly anticipated “Hey Diddle Diddle” DVD arrived in the mail yesterday. It did not disappoint. To borrow Amy’s description, Leo practically vibrated he was so excited to watch it.

Last night, as I performed my evening delicate balancing act of cooking dinner-unpacking lunchboxes-unloading-loading dishwasher, Leo watched his new “movie” in silent rapture. Silent, that is, except for when he was jumping up and down and exclaiming “Yay!” and singing along with the lyrics.

I’ve said it before and I’m sure I’ll say it again. Leo’s ability to express joy and celebrate the littlest things in life is humbling and inspiring. And I do mean celebrate. I know this is true of many kids, but I’ve never seen it like I see it in Leo. Another bonus? You always know where you stand with Leo. When things are good they are very, very good. When they are not they are…not.

It’s not just that Leo expresses happiness differently and more, shall we say, exuberantly. It’s that he prefers to be happy. He actively seeks this joy. It’s the good old default setting that I wrote about once. I think about this often, especially, say, when he's run to the back of the mini van or decided he absolutely does not want to get dressed for school. Sure those moments are maddening and bang-my-head-against-the-wall worthy. But they are fleeting. And they are only a tiny part of the whole, complicated package that makes up Leo.

I was talking to a friend the other day about our kids and she mentioned how she felt almost frustrated with her typical child, for not being more open about how she felt about “fun” stuff. Was she having a good time? Did she think what they were doing was exciting? With her other child, who has Down syndrome, there was never a question. If she was happy everyone knew. And if she wasn’t, well, you know the rest.

What I wouldn’t do to attain the place that Leo has found. Oh I do, but not with such ease. Luckily, Leo’s glee is often contagious.

Leo with Grandpa at Laurelhurst Park, summer 2008. Just look at that face.

Ebullient, unrestrained joy is a beautiful sight to see. I hope you get to experience it someday. It truly makes all the hard stuff, well, not so hard.

When All Else Fails: Hump Day List

Halloween is over and it’s apparently Christmas, did you know? At least according to Midtown Manhattan. The Radio City Christmas tree is up and and the pretzel/hot dog vendors have their little carts regaled in Santa hats and twinkling white lights. Life is passing by at an uncomfortable speed and I want to put the brakes on and enjoy, because no question, October to December is my absolute favorite time of year.

In other news, the only realistic blog I have in my right now is bullets, so here goes:

-Ellie continues with the nightly bedtime hilarity. It seems that every other night she plumb passes out with the help of her ballet shoes music box and a long backrub. But the nights that she doesn’t? She is often in and out of our room a half a dozen times with various comments and requests. Mostly, she just has to tell us again that she loves us, which, as I’ve said before, how can you argue with this?

-Monday night, however, she ventured beyond the second floor and scared the heck out of me when the little stealth Ninja silently, snuck up on me as I washed dishes at the kitchen sink. She said “Hi Mommy.” And when I gasped and jumped three feet, I thought she was going to burst into tears. She couldn’t figure out how she could have scared me.

-Thirty minutes after the sneaking-up-on-me incident, Ellie knocked on our bedroom door to give Erin her watch (which she had found in the bathroom). This was after she tried to stuff it under our door. It just cracks me up how she knocks on our door.

-Ellie now has homework. She’s three. I think it’s a little silly but oh well. Apparently many of the parents have requested it. It’s just little worksheets. She knows a lot of her letters and numbers but the actual writing of them is definitely new to her. But she’s very excited to settle down on Saturday mornings to do it and bonus: when she’s doing it Leo wants to do his, so that works out well.

-Leo has an amazing imagination. He sees “stairs” in the shape that he’s bitten pizza. The other night he declared the tortellini he was eating for dinner looked like a pirate hat (and you know what? He was right). And of course, he put the little tiny tortellini pirate hat on his head (not all of his imaginative observations are food related, I assure you, these are just recent ones).

-Leo says “bless you” when someone sneezes. He’s really quite a polite child. I love it. He’s also started saying “Here you go” when he gives you something.

-In shopping news, how cute is that whale sweater up there? I spotted this at Forever 21 (not a store I frequent, in fact I have never even been in one) which I ventured into on my way to work this morning. This sweater reminds me of 1983 and I love it. Unfortunately the extra small would be huge on Ellie but mental note to check back there again when Ellie is a little bigger.