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.

An Irony Not Lost, With a Void

Many years ago, my mother was a special education teacher. And some of her “favorite” students? They had Down syndrome.

Over twenty years later, I still remember little David. He was tiny (well he was only four), with straight, warm chocolate colored brown hair, cut in a bowl shape (give him a break, it was the mid-eighties). You walked into the classroom and David threw his miniature arms around you. Inappropriate? Of course. Sweet and irresistible? That too.

A few times a year my mom would let me skip class and come to her school. I adored these sweet, affectionate little children (it was a “multiply disabled” preschool class, some had Down syndrome, some had other general developmental delays). They could also be scary. They had tantrums and outbursts. Sometimes it was hard to understand what they were saying, and that was the kids who talked at all.

But I knew the day I met him why David was my mom’s favorite. He was a charmer. He took you by the hand and led you to what he wanted to do, whether it was books or dress-up or wooden blocks. He was also sneaky. Sure David, you can have another cookie! Oh, whoops, they aren't supposed to have anymore cookies? David didn't speak much, but he never failed to get his point across. And that smile? Killer. Hmm...remind you of anyone?

Of course, the irony is not lost on me, how much my mother could have helped me with Leo, if she was still here, as a special education teacher, and of course as a mother and grandmother (my mother actually went on to teach "regular" elementary ed, but I'm sure she would have had plenty to add when Leo showed up).

Also, I can’t help thinking about my fourteen year old self, sitting in that huddle of preschoolers during story time. I had no idea what my future held, that my fortune held a child not so unlike one of them. Life is funny, isn’t it?

In those dark, early days after Leo’s birth, when I stared for hours at this little unexpected stranger with the extra chromosome, sleeping sweetly in the infant swing, I had countless one-sided conversations with my mother. Why did this happen? What do I do? What will he be like? What is he capable of? What should I expect?

And also? There was shame. Shame that I had not given her the “perfect” grandson.

Obviously I can only speculate as to what her reaction would have been. I think she would have grieved with me, but that wouldn't have lasted. In many ways, my mother was a very no-nonsense person. Not one to linger in tragedy (as I melodramatically viewed Down syndrome back then), her style was more to get up, brush yourself off and figure out What To Do Next. It’s no accident that one of the adages of hers that I repeat in times of trouble is “Every problem has a solution.” (Which is not to say that Leo is a problem, but when he was first born? Down syndrome was a big problem for me.)

Of course I know now that my apologies to her would have been more than unnecessary. There were so many years that she never thought she’d even have a grandchild, Leo was a gift, with or without Down syndrome.

At the worst, I think she would have worried. She would have worried for Leo’s health and worried about the added challenges that we would have with Leo (and that Leo would have). But if anyone were capable of loving a grandchild too much, it would have been my mother, who was unequivocally born to be a generous, doting grandmother.

I look at Leo today and I see the little David that Leo’s grandmother adored. And I also see glimmers of Leo’s grandmother, dancing around in his round little face, on his light brown hair, (grandma’s exact shade) and in his steely blue eyes and his cleft chin, the chin that is just like grandma’s.

She is never far from us, even though I know of course, that she is.

It Takes a Village

This morning was Leo’s spring parent-teacher conference. I last met with Leo’s teacher in the fall. I speak with her on the phone or via email or Leo’s communication book fairly regularly, so I didn’t learn much that I didn’t already know.

Even though it made the morning a bit extra hectic (and I had to bring Ellie with me) I like to get to Leo’s school as often as I can and it’s fun to visit Leo’s classroom. This morning, for example, I found out they are growing potatoes! Leo pointed to the tiny green sprouts poking through the dirt in the big purple Rubbermaid container and signed “baby.” Well they were baby potatoes, he was right.

Perhaps my favorite detail about this morning was seeing pictures from the Dr. Seuss Birthday celebration a few weeks ago. There was Leo, in a circle with a group of (all typical girls). He had his legs crossed, was leaning back in his chair and reading aloud from The Cat in the Hat and the girls were enthralled, clearly under Leo’s spell.

You certainly can’t complain about a meeting with a teacher that begins, “Well everyone loves Leo.”

I’m not surprised to learn that Leo is the “mayor” of his school. He greets everyone in the hall and everyone knows him. He is collectively adored.

I pressed her for the negative. It couldn’t be a total love-fest. Was there anything he needed to work on? Anything we should be doing with him at home?

He still has a hard time transitioning sometimes, but he is easily “redirected” when reminded of an upcoming fun activity. He can be a little overly “chatty,” both with his neighbors and teachers. He is constantly asking questions. Why? What’s that? (Obviously not much of a “problem” in my book for the speech delayed kid to be talking too much but I can imagine it can be annoying as a teacher).

Mrs. L. does think Leo could improve his handwriting, which I was surprised to hear, since I think it’s pretty darn impressive. But clearly I’m a little biased.

The discussion turned to the haircut/sensory concerns. Mrs. L. wanted to know what exactly was Leo’s “issue” with getting his hair cut, so that she and the Occupational therapist could figure out some techniques to help him overcome it. I explained in highly technical terms, that he basically flips. Out. I shared with her the fact that Leo’s been seeing an ENT since he was about six months old. Maybe he just doesn’t like people going at his head with sharp objects?

She agreed they would continue to work on it and even joked she’d been tempted to make a few snips here and there, when they were working with the scissors, but she was worried Leo would get the wrong idea and think it was acceptable to use scissors on other people’s hair.

And then I said in all seriousness, if you can cut Leo’s hair, I give you my blessing. For real. I was pretty much convinced she would have better luck than we do at home. I think we can all agree that most (all?) children are completey different people at school vs. home, so why not? I can see someone reading this and thinking, what, you can't even cut your own kid's hair? But it's not that simple. It reminds me of how Leo was potty trained at school for ages while he still continued to have accidents at home, or how he has always been so good about holding the hands of teachers or aides but up until very recently, would try to bolt when I walked with him.

They are just different creatures, when they're away from us. I firmly believe this.

Back to today. I arrived at work this morning (about an hour after meeting with Leo’s teacher) to a phone message from Ms. L.

“Just wanted to let you know we’ve made some progress in trimming Leo’s hair. It’s not finished yet but it’s a big improvement! I’ll keep you posted.”

And then an email, a few hours later:

Hi Maya,
As per my phone message to your work number, we are still working on Leo's hair - it's definitely a work in progress and will take days to complete. The Health teacher, came in today and told us that she used to be a hairdresser. She has all her equipment at home and will be happy to cut his hair (fix what I've done) once we feel he is ready. We're aiming for the Wednesday after vacation. She would like to know how you would like it cut. If you could find a picture of a haircut you like and could send it in that would be great.
Mrs. L.

And shortly after that email, another note arrived, with these attached:



It’s clear that they are using this as a “teachable moment” which I think is sweet. And smart.

Mrs. L. said that Leo "fussed a bit" [I had written her back inquiring how he reacted to the haircut]. She went on to say: "I did a little at a time. We used a doll and "cut" the dolls hair ( it didn't even have any hair) and then Leo's hair. I'll try to do a little every day to even it out. Tomorrow we talked about doing the front (just so it's not hanging in his eyes)."
Mrs. L.

My heart is swelling. It takes a village, indeed.

Friday Listiness

1. The forecast for today is 70 degrees. SEVENTY. Yes, I’m shouting. Less than a month ago we had a blizzard. I love the three days of spring (and I know, I know this isn't spring yet but just a tease) we get in New York City. Trust me, we go from cherry blossoms to jungle humidity in about sixty hours here and I am relishing every minute of this little spring preview.

2. People are walking around midtown Manhattan in flip flops and short sleeved shirts. We are desperate (clearly) for warmth. Tomorrow is supposed to be more of the same. Our big plans include a trip to Trader Joe’s for homemade salsa ingredients and, well, coming home to make homemade salsa. And play outside. Compensate for last weekend's very busy weekend which included heading into Manhattan not once, but twice, and on the same day of the worst storm in our area's history. Weeee!

3. OK, fine. I guess I’ll throw in a little vacuuming, laundry and yard work too, just because the house/yard is crying out for it.

4. All this warm(ish) weather has me craving these for Leo:

And for Ellie:


I’m probably jumping the gun just a tad regarding sandal planning (we could certainly get more snow knowing the way things go around here) but hey, a girl has to dream, have goals and make plans.

5. For those who may not know, Leo’s favorite color is yellow. If given a color choice, ever, it’s always yellow. A yellow balloon at Trader Joe’s, a yellow cupcake from Magnolia. He meets yellow items with such enthusiasm that I’m not sure what he’s going to do when he gets yellow shoes. But I’m going to risk it.

I admit, I went a little back and forth on the yellow ones. Are they a little too something? Maybe. I don’t know. Honestly though, isn’t life too short not to wear yellow shoes, if given the chance?

6. Ellie has become our sporadic translator. For the most part, I can understand Leo pretty well and a lot of his language is contextual, that is I get what he’s saying based on what we’ve been talking about already. But sometimes, I am just stumped. What did he say? That’s when Ellie steps in and matter-of-factly announces “he said rock” or “he said owl.” I love that they know each other this well.

7. I finally got my act together and contacted Leo’s occupational therapist about his “sensory issues” surrounding haircuts (or should I say his hysterical, scary, traumatic (for all of us) refusal to even entertain the possibility of a haircut). I tried to make a little joke of it in my note to the OT, saying something like “in case you hadn’t noticed, Leo will not tolerate a haircut" (my little ragamuffin). Parent/Teacher conferences are next week and she’s agreed to meet with me then. In the meantime she said she’s going to start doing some exercises with him that should help. I’m interested to know what those entail.

If all else fails, maybe the OT will cut Leo’s hair? Cause that's totally in her job description, right? (It's a shame the bus driver obviously failed to take the hint that he too could cut Leo's hair).

8. Lastly, an answer to my thank you note to Leo’s speech therapist for her note about Leo's reading of The Runaway Bunny (yes I am one of those parents who thanks teachers and therapists for every little thing they do, including taking the time to write me a note with a sweet detail about my child’s day. What can I say but that I come from a family of teachers and I know how hard they work/how overworked they are).

Her response:

"It is always my pleasure to work with Leo. He is a very, very hard worker. Each day continues to be richer than the last. Incorporating literacy into the sessions is an important part of speech therapy for my students. Leo responds very positively to books. Today he read "Brown Bear" along with me and did very well sounding out the words. Perhaps he has already read it at home, since he did such a great job. We worked on prediciton as well, and he was right on. Yes, Leo has become increasingly engaged and verbal recently and I believe this is the beginning of some very exciting times!"

I couldn't agree more.