When the Weekend Can't Come Fast Enough

Allow me to set the scene. Our house, this morning (you totally know where this is going, right? What is it about this week’s mornings?).

Leo ate a good breakfast of French toast (frozen from TJ’s, before you get all impressed with me) and got dressed without too much argument. Then he decided he wanted cereal with milk, so he did what he is apt to do, “put his order in.” He goes into the refrigerator and/or cupboards and places what he’d like to eat on the kitchen counter.

That was all fine and swell and I would have been agreeable to Leo having “second breakfast,” except that it was about 7:40, the bus was imminent and by no means did I want a repeat of yesterday. I told Leo this and so my little mule and I had a quiet war. I put the carton of milk back in the refrigerator and the cereal back in the cupboard and he trailed behind me and took both items back out and placed them on the counter. We did little dance about ten times.

That. Boy. Is. Stubborn.

Seriously, sometimes the number of times I have to say something to him (such as, Leo, there is no time for cereal, the bus is coming and you don’t want them to leave you like they did yesterday do you?), well, I get on my own damn nerves.

The bus came. I panicked briefly when it appeared briefly that Leo was not going to go outside. But I cheerfully “redirected” him with clapping! and exclamation about his lizard! (Remember, the famous rubber lizard). And how exciting would it be to show the bus driver his gecko! (Because really, can you think of anything better?).

I should pause here to add that while all this was going on, Ellie was sitting on the little potty that we glamorously keep in the living room (no bathroom on our main floor—I know, I know, don’t even get me started).

Every morning we go to the bus as threesome. Usually Leo makes the dash across the lawn while I hold Ellie and she does her usual coy wave and sometimes even deigns a smile with the bus driver and aide.

Today though, with Ellie on the potty and the clock ticking and the bus waiting, I called to Ellie over my shoulder as I led Leo outside that we’d be right back. Clearly this was SO not OK with her. Because the next thing I knew, Leo was frozen on the lawn, refusing to get on the bus because Ellie was standing on the front porch with her pants around her ankles and the tears flowing. Between the volume of her cries and the fact that she was clearly unhappy (Leo is very empathetic, especially to Ellie), well that was it. Leo was going no where.

This was one of those Classic Parenthood Moments where I really did wonder where the Candid Camera was hidden. I mean, what a sight. The half naked, hysterically crying toddler, the trying-to-remain calm mother, carrying her kicking and protesting kindergartner across the grass.

Sometimes, all you can really do is laugh.

And take deep breathes. Deep, deep breaths.

A First, With a Side of Lizard

Some mornings, Leo springs out of bed with all the enthusiasm of a celebratory spark plug. He jumps up and down for scrambled eggs! He gleefully picks out his own clothes (a yellow shirt, if available, always). He cheers when I find a new episode of "Dora" for him to watch while I make lunches for him and his sister.

But many mornings are not so easy. Leo will not get out of bed. When he does finally get out of bed, Leo moves downstairs at a mind numbing, glacial pace. When asked what he wants for breakfast, the only answer is a furious and incredulous “No!” Even the beloved eggs are met with fury.

Luckily, Leo has always been fairly resilient. I believe his teacher would refer to him as "easily redirected." I wouldn’t exactly call Leo moody, but if there is an upside to his sometime mood swings, it’s that as quickly as he moves from incredulousness to be being asked what he wants for breakfast, that’s how swiftly he becomes cheerful. He’s only human. When he's angry he's very, very angry. And when he's happy? He's a sweetheart. No big news here.

So this morning it was a relief when Leo had successfully shaken the grouchiness and was finally dressed in his underwear and socks and settled comfortably on the couch and in front of the coffee table with his plate of scrambled eggs (the final shirt and pants go on after breakfast is completed—trust me, I’m a veteran ketchup stain remover). Have no doubt though, there was certainly a battle to get just that minimal amount of clothing on and just to do so there were plenty of threats to turn off the TV, to take away the eggs. He comes around. Eventually.

But today, I just knew. When I looked at the clock and it was 7:40 and Leo was still just wearing socks and underwear and Leo’s bus can come anywhere between 7:45 and 8:00 a.m. Well I knew. For the first time this year, I would be driving Leo to school myself. Certainly not the end of the world but not the most convenient turn of events either.

Sure enough, Leo’s bus pulled up at about 7:47. I did my best to wrestle the clothes quickly on him. Today he was to wear a new, quite adorable button down shirt decorated with gecko lizards. I thought the fact that some of these lizards happened to be yellow might entice Leo to get dressed quicker (maybe we would make the bus that was pulling up outside the house at this-very-moment?).

But Leo started arguing with me and stomping his feet and saying something I couldn’t understand. At first I thought he just wanted to wear a yellow shirt (an almost daily request). The next thing I knew he was running upstairs. Awesome. Keep in mind the bus was, a this very moment, outside our house. The reminder honk was imminent.

I dashed outside and across the lawn and asked the driver in the sweetest possible voice I could muster, if he could come back in five or ten minutes, maybe pick up a few more kids and swing back to get Leo (knowing full well this was totally not going to happen).

And sure enough it did not happen. The driver shook his head apologetically and shrugged his shoulders and I sped back to the house for Plan B.

When I returned inside, Leo was standing at the bottom of the stairs grinning proudly ear-to-ear, holding a tiny rubber gecko lizard. That’s what he’d run upstairs to get. He wanted to wear bring his lizard, in honor of his lizard shirt. Makes perfect sense, really. And why hadn't I thought of that?

Except for the fact that Leo tried to melt like a wet noodle into his car seat when one of the aides tried to extricate him from the car in the “kiss and go” lane at school, this story has a mostly happy ending. Leo got to school, eventually, rubber gecko and all. And I guess considering this is the first time we've ever "missed" the bus and it's almost May, well that's pretty good, right? RIGHT?

These are the days, when I finally do get to work, my first question is: Is it lunch time yet? Or better yet, happy hour?


No gecko here, just lunch bag turned silly hat. Leo is almost always game to make people laugh. And in Leo's eyes, almost anything can be a hat.

Too Loud

Say you have an otherwise adorable, mostly sweet little boy who sometimes decides things are “too loud.” And we’re not talking rock concerts or crowded festivals. We’re talking empty restaurants and bathrooms and bedrooms.

Since you are a worry wart, worst-case scenario type who tends to catastrophize (my new favorite word, thanks grandpa , for the reminder), you immediately start Googling “sensory issues” and “delayed autism” and “behavior modification.”

You email Adorable Boy’s teacher, the same one who let him wear headphones in the lunchroom last week because it was pronounced “too loud” and urge her not to make this headphone thing a habit.

Then she emails you back and says she doesn’t think it’s sensory at all, since Adorable Boy refused to go the bathroom yesterday, declaring it was “too loud.”

I believe this is a behavior issue, said Adorable Boy’s teacher.

I have to say I’m relieved.

Or maybe, it’s as Erin refers to it (and leave it to her to add some much-needed levity to the matter), it’s just Leo being a Little Shi*.

Whatever it is, Leo is certainly keeping us on our toes lately.

All in all, his mood is great. Dare I say, back to his old self, when it comes to the day-to-day? I’ve added fish oil to his daily regimen (after hearing from other DS Moms and reading a few studies claiming that it may improve mood as well as brain function-hey it couldn’t hurt, right?).

But Sunday, after a long, exhausting Saturday that included for Erin, supervising the tiling of a bathroom and for me, hosting an extraordinarily lucrative garage sale (all while both of us supervised the hooligans and made sure they didn't escape with any of the garage sale customers), we decided to celebrate by all going out to brunch, which we rarely do.

As usual, Leo didn’t want to leave the house (who could blame him really, it was a dreary, rainy day and to be fair the poor guy is go-go-go all week at school and after care). He was fine once he got in the car and was fine as he walked hand-in-hand with Erin up to the door of the restaurant and then…he collapsed in the entry way, right next to the hostess stand.

“Too loud,” Leo said, covering his ears.

Keep in mind we were literally the first customers of the day. The only people there were employees.

Twenty minutes later, Leo finally came to the table.

Did you know it’s possible to eat an entire brunch with one hand covering an ear?


It is. Just ask Leo.

So I will add this “Too loud” business to the list of things that Leo does that I just don’t understand. And I will tell myself that it’s ok. I don’t need to “get” everything. But I wish I could help him.

And now I'm off to Google Little Shi* Syndrome.

Hair by the Village, Finally Spring and Two Steps Forward And...Well, You Know

1. Leo's hair.

It's so much better than it was! (Please pay no mind to the odd "There's Something About Mary" cow lick that Leo woke up with.) Mrs. E. finally broke out the clippers yesterday (according to Leo's teacher, being a professional, Mrs. E. felt clippers were the only way to really make it look "clean.") Apparently a Zhou Zhou Pet was just the ticket to distract and calm Leo while the clippers were doing their job.

2. After an initial good week behavior-wise (such a good week that we've decided to hold off on the behavior specialist after an email from Leo's teacher in which she pointedly said "I don't think Leo has a behavior issue") Leo's teacher emailed me today to say that he refused to go into the cafeteria for lunch because they arrived late and it was fuller than it usually is and therefore deemed "too loud" for Leo. It took almost all of the lunch period to get Leo into the room and this was only after Mrs. L gave him headphones to wear.

Oy.

I realize this is not a behavior thing. It's that blasted sensory crud. It makes me feel so helpless and frustrated. The thought of Leo wearing headphones during lunch does not make me happy. I mean, I get that you do what you have to do and I'm all for whatever gets you through the day, but really, doesn't he have enough strikes against him? Headphones in the lunchroom? He has to be that odd man out? Filing this under information I sort of wish I didn't know.

3. Enough of that for now.

4. It's finally spring! I'm enjoying the warmer days and nights and reveling in the mild temperatures. The heat can't be far away. Every morning and night on the way to and from the car Ellie has to stop...


and smell the flowers.

I think she's onto something.

The New Adventures of Old Leo

Slowly but surely, the Old Leo seems to be returning. He’s been much less cranky this week (knock on wood!). There’s been more agreement and less haggling, and he’s been joining us at the dinner table without a fuss.

Of course, getting both hooligans into their car seats after daycare at the end of what’s been a long day for all of us continues to be the bane of my existence. Seriously, all I want to do is go home and all they want to do is dance around in the back of the mini van. I know, I am so not the Fun Mom.

Last week, in the thick of Leo’s mood, I asked his teacher if the school had access to a behavior specialist, someone who could help us figure out how to manage Leo’s frustration (and ours). Yesterday there was a form in Leo’s backpack requesting my signature so that I could “consult” with the behavior person. For some reason this made me nervous—I didn’t want there to be some official notation in Leo’s file that he’s some kind of a behavior case. A scarlet “B” if you will.

Leo’s service coordinator responded to an email I sent asking about the form, assuring me it’s just a formality and will merely give this person permission to evaluate Leo. So...I guess we'll be moving forward with that. In other news, the service coordinator wants to schedule Leo’s annual review next month.

Gulp.

Apropos of nothing, can you believe this guy ever gives anyone a hard time?

A Enigma and a Nod to Emerson

Every since I returned from Portland, Leo has been in a mood.

I hate to generalize, but I think in this case, it’s fair.

Leo has been angry, aggressive and impulsive. And did I mention angry?

I wish I could capture his scowl. His furrowed brow, his tiny pursed lips. His expression is so clenched, so exaggerated and dripping with fury, it looks painful.

I know it’s painful for me.

Two nights in a row Leo refused to come to the dinner table, even for his beloved eggs. Last night he sat at the bottom of the steps in the entry way and literally wailed. It’s hard to ignore and just go along like everything is fine with this sort of behavior. It’s hard not to let it get to you.

He’s been complaining about things being “too loud,” so much so that I actually took him to the pediatrician on Monday to see if he had an ear infection (he’d been literally holding his ears). I actually really hoped he had an ear infection. Wouldn’t it be nice to have a little miracle cure? Nope. He checked out just fine.

With any other child (say, one with 46 chromosomes), I would chalk this up to a phase. But with Leo, my mind goes in all sorts of directions. And Dr. Google doesn’t help.

I know that by nature I'm a worrier. And when it comes to the kids, when things are particularly hard, I tend to think They Are Always Going to Be This Way. I think back to early newborn days when Ellie was waking every hour. It didn't seem possible that would ever change, but of course it did.

Eventually last night, Leo did come around. He joined Erin at the table and gulped down pasta while Ellie and I went upstairs to do bath and books. He’s seemed happier lately when things are one-on-one which is fine when it’s possible, but newsflash to Leo: You’re not an only child. We have no plans to get rid of Ellie any time soon.

I emailed Leo’s teacher on Tuesday to find out if she’d been seeing any of the troubling behavior we’d seen and she said Leo had been completely agreeable.

Then I received this email yesterday: “Leo is having a difficult day today. At times he is refusing to do his work or listen to directions. I guess this is what you had written me about before. He eventually comes around but today it's taking him a longer time.”

Not what I wanted to hear. Like most kids, Leo’s always been a Different Person at school and has almost always saved his challenging behavior for lucky us at home. Obviously this is not fun for us but it’s certainly preferable to him being a turkey at home and at school.

But.

This morning he came downstairs without much haggling. He ate his breakfast in a timely manner. He didn’t assault me when I tried to help him get dressed. And best of all, he bolted out the door calling, “My bus!” upon seeing his morning ride to school. He practically skipped toward the bus and boarded it without protest or attitude.

So maybe today is a new day? Maybe it is just a phase. Or maybe it’s as a few people have suggested, that Leo is actually angry with me for going away for almost a week. He didn’t get to go see grandpa and grandpa like Ellie did. He didn’t get to go on the airplane. Is he just ticked off?

So today I am celebrating a good morning. I am hoping for the best and taking it one day at a time (any other good cliches I can spout?).

But seriously, here's something that feels particularly apropos. I really do love this one:

“Finish each day and be done with it. You have done what you could. Some blunders and absurdities have crept in; forget them as soon as you can. Tomorrow is a new day. You shall begin it serenely and with too high a spirit to be encumbered with your old nonsense.”
--Ralph Waldo Emerson

Monday, Leo’s teacher sent this picture home in his backpack.

He was Student of the Month at his school. And why was he recognized?

For gratefulness.

Oh Leo, you are my little mystery.

Clicking My Ruby Slippers

More and more, Portland feels like home.

The afternoon of our arrival, Ellie running into the arms of Grandpa at the airport.

I don’t know what it is. The older I get, the more I am learning what’s really important. What really matters (if you need any more convincing, see above photo). Finally. I know it’s such a cliché. And I know that no city or place is perfect and that no matter where you go, there you are. But.

Recently, Ellie and I had the privilege of traveling to Portland to attend the opening of my dad’s one man show. Unfortunately, Erin and Leo didn't get to make this trip and it would be an understatement to say that Portland certainly isn't the same without them.

Oh, Portland.

With your lush, ripe, greenery.

Your explosions of spring flowers. Words hardly do it justice.

Ellie and I were up and out before 8 a.m. most mornings.

Destination: Stumptown.

Ellie (poor girl) associates coffee with Dunkin Donuts (the closest “coffee shop” in our New Jersey neighb) and therefore “going to get coffee” equals Munchkins. So when I told Ellie we were going to get coffee, her first question/statement was “I want a donut.”

And donut she had.

Voodoo Donut, to be specific. And in case you were wondering, yes, those are Fruit Loops on that donut. Thanks for asking. I am lucky Ellie didn't explode with joy.

Meanwhile, I had Thai every chance I could.

It reminded me of when I went to Paris for the first time and had my first “real” crepe. Thus began a one week crepe binge. Sometimes I would have two or three a day (cheese for lunch, followed by Nutella for desert) just because I could and just because I knew when I returned home to the states crepes would not be sold on every street corner.

It was great to see old friends.

I was finally able to meet my dear friend Elizabeth’s children in the flesh. Facebook photos only go so far.

It was a dreadful, stormy, bleak day when we met so we gallantly (stubbornly? desperately?) trudged our whimpering children to a nearby coffee shop in the Pearl District. While ordering, I overheard Elizabeth ask for tea, and I worried for a minute that she'd become one of those people who can wake up at five a.m. and still be cheerful with her two and four year old at noon without caffeine. But then I realized the tea was for her two year old. She ordered a triple latte for herself and I breathed a sigh of relief. Pfew. We could still be friends.

That coffee shop was also the scene of one of my favorite Portland Moments. It was when Elizabeth tried to convince her four year old to ask the barista if her empty cocoa cup was "compostable." I'm sure the Oregonians reading this are shrugging their shoulders. Compostable? Sure, why not? Let's just say things are not quite this way in the old NJ.

Later, the short people explored Tanner Springs Park, a sweet little oasis in the heart of the Pearl District (not that the Pearl District exactly needs an oasis). (We later realized we probably shouldn't have let the kids, um, tromp all over the ecosystem. Sorry about that.)

Later the girls enjoyed the view, high above industrial Portland, while we waited for the elevator.

Oh Portland, with your embarrassment of riches at the famed Portland Farmer’s Market. You are glorious, even on a raw, wet April day.

Flowers for sale (It's only April!)


Ellie boogying in the mud.

Oh Portland, with your food carts. (By the way, that little cart? Sawasdee Thai Food? BEST PAD THAI EVER. Oh and $6. Take THAT Yucky New York City $12 Pad Thai. I spotted it on our way home from the Farmer’s Market and literally yelled, “Stop the car!”

Ellie adored the park of my childhood, Laurelhurst, and all its riches (Hey, I think my two-year-old bottom rode that same teeter totter!).

Oh Portland, with your funny little pieces of “found art.”

Someone stuck this funny little duck (?) in the tree outside my dad and stepmom's house. Because that's what people do in Portland.

Oh Portland, with your wisdom:


Oh Portland, two words: Waffle Window.

Genius. (Pictured: caramel with fresh bananas and pecans)

And only a grandma would be in possession of a certain two and a half year old’s dream come true:

a Pink umbrella. Yes it’s true.

And I know we’ve covered this, but I couldn’t resist one more shot.

Beer and peanuts.

Don’t worry. Before we took Ellie to the brew pub she had a nap and a sufficiently kid friendly afternoon at OMSI.


Of course, it’s tempting to romanticize a place when all you are doing is going from family member to family member, friend to friend, shopping and eating Thai food and drinking Stumptown and Mirror Pond. That’s not real life. If we lived there, there would still be bills to pay and jobs to work and kids to ferry to and from school and day care.

Sure there would be the usual drudgery. But with family.

Grandpa and Ellie playing their favorite game of this trip: "Grandpa's rocking, Ellie's rocking, let's touch feet!"

There would be many friends.

And much, much better scenery.

And Another Thing

In my haste to commemorate this little corner's two year anniversary, I total missed the obvious.

Thank you.

Not to get all Academy Awards on you, but really, this place would not be the same without you. Without comments. Without knowing that somewhere, someone is actually reading what I write. Otherwise, I could just scrawl in a notebook like I did for fifteen years before I started coming here.

So yes, thank you for coming to listen to me rant and whine and kvell about Down syndrome and all its highs and lows.

Thank you for indulging me by listening to the tales of Leo and Ellie and all their adventures and misadventures as I lose my patience and mind/laugh/drink wine/sigh deep sighs/continue to be sleep deprived/wonder how life could have ever been so simple (before kids)/wouldn't have it any other way (now).

Thank you for your patience and empathy when I talk about my dead mother.

Thank you for returning for all the talk about shoe shopping and baking and OCD and ear infections and strep throat (BORING) and the continuing saga of Leo's haircuts and...for slogging through all of it. And for staying around.

I really can't thank you enough.

Two Years and a Check-In

I'm here. There has just been a lot going on (I know, I know, snore). I rarely go this long without at least a quick hello. But there was busyness at work and the flooded basement and the moldy carpet and the money sweats. There was yard work (finally!) and cross country travel.

And I am making plans. We are making plans. A lot of plans. And my mind is swirling and hoping. Overwhelmed by all there is to do but feeling boosted by the knowledge that when you really want something to happen and people are pulling and praying and rooting for you, you can succeed. I don't mean to be cryptic, but right now I have to be.

And in the midst of it all, this little blog, my often mundane, tiny savior and sometime (OK, frequent) lifeline, just turned a ripe old two years old. It's hard to believe. I've made some dear, dear friends and can't imagine life without them. I think/hope you know who you are. I've learned so much and have so much more to figure out.

It's crazy to think that when I started coming here, this is what those little people I write about so often looked like:


And now, look at Ellie.

So mature, she's hanging out in bars.
(Full story: Grandpa thought Ellie would enjoy shelling peanuts (Boy, did she! Good call Grandpa!) at the Lucky Lab Brew Pub during our recent--and I assure all you Portlanders out there who didn't get a hug--extremely brief visit).

More soon.