Questions: Answered Offensively Late, Pt. One

Back in October, in honor of 31 for 21 and National Down syndrome Awareness Month, I opened up my blog for questions. About anything. And I answered a few. And then I totally dropped the ball. And I’m sorry. One of my New Year’s Resolutions is to be more on top of things. To not let things hang. To finish things and be done with them and move on. Yes.

I hope no one was hanging on the edge of their seats waiting for me to answer these insightful questions, which I really enjoyed reading and so appreciate people taking the time to write. And After Words, I especially apologize to you since your question had a bit of a time element, as the child you wrote to me about might already be driving or graduated from college. Sorry for the delay. Sidenote: Did you ever talk to the family? I'd love to know how it went.


After Words asked,
Do you think it's appropriate if a stranger on the street asks you about Leo's DS? If yes, what form would you prefer the questions take?

I have an acquaintance with a son whom I believe has DS. There's no particular reason I need to know either way--he's a lovely playmate when we run into him at the playground--but I always find myself wondering when we see them. Again, I don't know what would change about our interactions if I knew the answer to the question, and it seems gauche to ask it. What do you think?

This is a tough one. Part of me wants to say, go for it. Ask away. I would rather people be honest than sit and stare at Leo and wonder. There is also the education factor. Leo doesn’t have to be the Down syndrome Ambassador of the World, but there is a good possibility that Leo might be the only person with Down syndrome that some people meet. I don’t want people to forget him (and hopefully they’ll remember him for good reason, not bad!) and I want people to learn something from him (hopefully something positive, that he’s not a monster, that he’s just a smart little boy with a great sense of humor who takes a bit longer to do certain things).

Having said all that, I admit that after over five years parenting a child with Down syndrome, I am still terrified to ask a parent if his or her child has it. I am serious when I say that I sometimes just can’t tell.

I chalk this up to the fact that I am so accustomed to Leo and his peers with their extra chromosome that seriously, they have started to look “normal” to me. Oh sure once in a while I’ll catch Leo with that look, and it’s unmistakable, but honestly, I think it’s sometimes really not safe to assume. It’s the same idea as never asking a woman if she’s pregnant (what’s that joke about how it’s only okay to ask in the delivery room?). You’d really hate to be wrong.

So Afterwords, here’s what I’d do. I’d ask the parents where the little boy goes to school (assuming he’s school aged, keep in mind many kids with DS start school as young as age two in an early intervention program as they transition to school-age programs). That will undoubtedly get the the ball rolling towards more info on the little guy. It seems to me it would just naturally spring from there.

Obviously some parents are more open, some are more guarded. Probably no surprise to hear that if you met me at the playground I’d talk your ear off and you’d be sorry you ever asked me anything.

I hope that helps.

Gratuitious photo of Mr. Handsome and me.

And Leo and his classmates, from a bulletin board during the holidays at Leo's school which I have titled "Visions of Sugar Plums And Other Things."

What She Said

I’m reading The Possibility of Everything by Hope Edelman. It’s a memoir I would have never picked up but there it was, sitting on the "free books" table at work.

And so I began reading it last night, bored and exhausted on the cold, black, commute home.

The book Edelman became famous for is Motherless Daughters, which I started reading while my mother was dying. I sobbed through most of the book, a large portion of which includes women in their own words, talking about losing their mothers, many at very young ages.

I came away from the book mostly feeling like an ass for having such insurmountable, life-changing grief that I lost my mother at the comparatively geriatric age of newly turned 26, when there were so many sad souls out there who lost moms as preteens or teens or worse, just infants or toddlers.

But in Edelman's current book, I came across a passage that hit me to my core and summed up so eloquently what I feel, when I do allow myself to go there, to the grief (which isn’t often and really, who has the time?).

It’s at a point in the story where Edelman is consulting child development books on how to best handle her thee-year-old daughter’s imaginary friend. Edelman’s mother died when she was in high school, so she has no mom to turn to for parenting advice. Hmm. Sounds familiar.

Edelman writes, “I like to think that my mother, as a grandmother, would have been eager to share stories about her own early foibles to save me from making the same mistakes thirty years later, but really, who knows…

Probably my mother, whom I remember as gentle with her opinions, would have stepped back and allowed me to forge my own parenting path. Probably. Maybe? The truth is, I don’t know, and sometimes this not knowing makes me so sad I can forget how to swallow.”

Yes. Oh, yes.

Eight and Nine

Here are two more for the “Top 10” list for winter break. Why do I feel like this list might grow to "Top 20." Lists are fun.

Still kicking myself for not doing an "End of Year" post and so impressed with those of you who did. Would it be too late to write one in February?

Without further ado...

8. Adults Pursuits
Saturday afternoon (and not a moment too soon) I finally slipped out for some “Me” time. I did some leisurely kid-free grocery shopping (Heaven, even if it was Costco the weekend before everyone went back to school and also apparently decided to return their Christmas presents). I went to the mall to spend a gift card (a strand of fake pearls so I can be just like Julia Child—I re-watched “Julie & Julia” over the break, can you tell?).

But the highlight of my day was seeing a movie. Alone. I’m a huge fan of this. There is no haggling over what to see, no discussion of where to sit. It’s just me in the dark, alone, with a muted cell phone and for two hours, nothing and no one can touch me. I used to do this a lot before I had kids.

I saw “Up in the Air,” which was good but not great. I liked its intelligence, the writing was good and it definitely had heart, which for me, trumps everything. Ultimately I think I’m a sucker for any movie that has an Elliott Smith song in it (Oh, Elliott Smith, I miss you). I loved that they paired George Clooney with someone in his nearish age bracket, since it seems that it’s become Hollywood habit to have leading men involved with women who could easily be their daughters. Then I got home and IMDBed Vera Farmiga and hello she’s YOUNGER THAN I AM. She’s lying. She’s totally, totally lying. Right?

9. "Glee," Volume 2
I bought it with a leftover iTunes gift card that I forgot I even had (Christmas in January!). I think I burned a hole in Volume One I listened to it so much. I feel like a bit of a cliché for even talking about this, but it’s that good. It’s that mood altering and it doesn’t involve intoxicants so who can argue? On paper, it sounds absurd. Listening to covers of songs by Van Halen and Journey and Cyndi Lauper sung by teenagers? Riggghhhht. Sign me up! It just…appeals to the musical theater nerd geek in me (which is decidedly not buried very deep).

Maybe watching “Glee” and listening to its music has allowed me in some odd way to relive high school again but on my terms, and with killer, mostly upbeat but often sentimental, so all the better) background music. If I could do it all over I would not care so much, I would not worry so much (I know, so original) and I would definitely eat a lot more. Starvation=not recommended. And also? I should have been in glee club.

At this point, it doesn't matter at all. But still, things could have been so different.

Top Ten Things About Winter Break (In No Particular Order), Part One

Why hello there!

Remember me? I had SUCH grand plans about so many things this break. Household organization, cleaning projects, blogging and of course, time with the kids.

So I accomplished the time with the kids part. And then some. The other stuff, not so much.

Not that I’m complaining.

So, without further ado…

1. Leo’s Adenoid Removal/New Ear Tubes: The surgery went well, we go back for Leo’s follow-up next week. The worst part of the day (for me, anyway, I’m sure Leo would say otherwise) was the fact that we all had to be at the surgery center at 6:30 a.m. In the pre-op room Leo threw Ellie under the bus, calling out her name, in other words, suggesting perhaps she should be the one to get her adenoids out.

Six hours later we were home, lulled by Tylenol with codeine for an unprecedented nap (it’s been over two years since Leo took a nap at home).

I got cocky and rented a movie “On Demand” which of course I didn’t get to watch because he woke up. And the calm was short lived when Leo awoke at 3 a.m. the next morning, we gave him more codeine and it seemed to wake him up more. That’s when I learned that this kind of pain medication can actually amp up kids with Down syndrome. Well, of course it does. Why didn’t I know that?

2. Gifts:
We didn’t go crazy this year. The kids have so much. Overall I think they liked everything they got. The palace was not the hit that I'd anticipated (Leo actually seemed to enjoy it more). Oh well, you can't beat the price I got on that one.

Leo loves the airplane (it is really cute even if it’s not the like the ones I used to play with, sigh). He’s also having fun with this boat (seriously, to Leo, you cannot go wrong with a plane or a boat).

On a developmental note, I love watching Leo play with Little People and the like. His attention span is so much improved. He plays with such...intention.

For Ellie, the tea set is getting lots of play. She’s also having a great time shopping through the house with her new grocery cart. And yes, there’s been plenty of the sibling rivalry I expected with this one. Sigh. And I blame her newest phrase “I want a pink one” (whatever it is, she wants it to be pink—on the way to the airport to pick up the grandparents she announced she wanted a “pink airplane”) on this book.

3. Fun In Unexpected Places
Did you know that the Elizabeth, New Jersey IKEA is located across the street (OK, highway) from the Newark Airport? I didn’t. But I can tell you that it’s a lot of fun to watch the planes take off with a gleeful five year old boy, even if it is about 10 degrees Fahrenheit with wind chill. Although, I’m sure Ellie would say otherwise.

It’s also fun to play in the kid’s rooms at Ikea. While I figured they'd both make a beeline for the dreaded ballroom (which I was afraid to let Leo loose in, for fear he'd never want to leave (transitions are an, um, problem), it was the little "rooms" that really piqued their interest. Leo found about ten different beds that I’m sure he would have loved as his own and Ellie also enjoyed a real bed-she gravitated toward the pink adorned ones, shock (she’s still cribbing it and I plan on keeping it that way for as long as I can get away with it).

But probably my favorite thing that happened at IKEA was that Leo sat down at one of the kid's desks (there was paper and a pencil) and proceeded to write his full name. Perfectly.

4. Leo discovered “catch”
As in, playing ball. He can throw a ball with amazing skill and is pretty darn good at catching it. It can keep him occupied and giggling and engaged for a long time. He received a couple of nice, small, soft balls as gifts, perfect for playing indoors during frigid temperatures while recovering from minor surgery. And watching Leo play ball with his grandpa: Priceless.

5. Ellie’s First Haircut
Everyone seems surprised Ellie had never had a “real” (as in, I paid someone to do it and it wasn’t me). It was spur of the moment, Christmas Eve afternoon at the mall. Honestly, I think both kids were attracted by the sight of a row of television screens showing “Dora” (it’s one of those sit-in-a-Barbie-jeep-and watch a DVD places).

As hysterical as Leo gets, Ellie was cucumber cool. I watched her with fascination, the sight of a child not terrified by a haircut truly is a sight to behold. I love the cut, by the way. My instructions were, a simple bob, short, but long enough it could still go in pigtails (not that she allows those often). I think short hair is adorable on little girls. Think: Dorothy Parker meets Strawberry Shortcake.

And seriously, until she has an opinion, why not keep it easy? And let's be honest, with such epic cuteness, does the hair length really matter? Sadly, because it was unplanned, I didn't have my camera, so no photos of the main event (new year's resolution: bring camera everywhere!).


Before

After

6. Being introduced to my new favorite quote, by way of the always wise Cate:
“Everything will be OK in the end. And if it’s not OK, it’s not the end.” (author unknown)

7. Homemade gifts

And this might be my favorite gift of all this year. I am a sucker for the handmade. Bonus points if pasta is involved.

Stayed tuned for Part 2.

From the Offices of Granola, Holiday Mix and Oatmeal Cookie Central and "Uppy Uppy Uppy" and also: SNOW

You may have heard that it snowed. Why, yes it did.

We built a snow man. Leo was beyond excited…

even though our snow man was more like a snow bump. Or snow lump.
He didn’t mind. There was plenty of snow-at least a foot, but it was so powdery. Just not snow man snow.

It sounds corny I know, but it warms my heart how much joy Leo gets from the tiniest things, like a snow man/bump/lump. He is the eternal optimist and has the sweetest little soul. I just have to remind myself of this fact when he crawls into the back of the minivan and laughs at me and refuses to get into his car seat and I want to strangle him.

Here's an illustration: This is Leo doing his homework on Sunday night. The happiest little boy to do homework ever.

And, the fruits of my labors, otherwise known as “how I spent my Saturday before Christmas.”

These are just some of the homemade goodies for the many teachers, therapists, aides and bus drivers in our life. There are about twenty more bags that just didn't make it in the photo.

I admit, I got a little crabby and manic during the whole process. I kept thinking to myself, so THIS is why people give gift cards! But now that all the little baggies are stuffed and the labels are made and the ribbons are tied and the cards are written, it feels worth it.

And re. Miss Uppy Uppy Uppy, Ellie still seems under the weather. She took three hour naps both Saturday and Sunday but was up at 6 a.m. and in our bed this morning, which is never a good sign. And her new favorite phrase is “I want to go to your room.” Poor Noodle.

This morning when I left her in tears at daycare I told her we just had to get through one more day. Tomorrow is her holiday concert at the daycare (I’ll be bringing my tissues for that one) and it’s also surgery eve, as Leo goes in for new ear tubes and his adenoidectomy on the 23rd.

Tomorrow was going to be my one day to do everything I needed to do before spending the next twelve days straight with all kids all the time (I'm off work for almost two weeks--notice how I do not call it a "vacation"), but alas, it looks like I will have a partner in crime as I clean the house and finish up with the last minute Christmas and grocery shopping.

I can think of worse things.

Bye Bye Hanukkah, Hello Weekend and Princess Enabling

Poor Ellie. This was so not the Hanukkah picture I was going for. Tonight is the last night though, so the pressure is on to, um, document it a little better than this. We'll see how it goes.

Back to poor Ellie. And Leo. What a week it's been. The weekend couldn’t come soon enough, for any of us. Last night, thanks to traffic from an accident on the way home, good old daycare pickup was at 8 p.m. They had to make my children grilled cheese sandwiches. Sorry, but I don't usually plan on having them there until after bedtime. Ugh. And yup, cue the mom guilt. I know it’s no one’s fault and this kind of thing is rare (has only happened one other time since September) and they will have no memory of this (I hope) but still, it is a long, long day for two little people and I can't help but think it takes its toll. And so I feel guilty. And I know, I know, guilt might just be the most useless emotion out there, but it’s also so easy to go there! And so hard to resist it.

I let Ellie sleep as late as I could this morning (not an option with Leo-our little rooster is up by 5 a.m. most mornings, sigh) and was prepared for more tears at drop-off since I knew she was tired and is still fighting that cough, but she actually smiled and squealed when we pulled up to daycare this morning, saying "there's my school!" It's heartwarming and humbling how resilient children are.

We have a mellow weekend planned, well as mellow as a weekend could be when it involves baking about six dozen cookies, and making about five pounds of Leo and Ellie’s Famous Holiday Mix (it’s not as hard as it sounds, it’s basically Chex Mix with red and green M&M’s) and compiling all of that into the requisite cute and appropriately decorated containers as gifts for the village of teachers and therapists. I know gift cards are what they really want and what everyone is saying we're "supposed" to get them but we just can't swing it this year.

Basically, it’s the calm before the (good) storm and the next holiday and the next round of relatives (Hi Grandpa! Hi Grandma! (they arrive from Oregon for five days on Dec. 26).

And speaking of storm, did someone say snow? Up to ten inches are possible in New York City and probably even more in our parts. Leo’s played in the snow before but last winter Ellie was still too little to really enjoy it. A few weeks ago we got a dusting and she was giddy, so I can only imagine what a real snowfall will make her do. I have to say, as long as I can get to the store tonight to finish up all my baking supply shopping, I wouldn’t mind being snowbound for a day or two.

Or the whole storm could just totally blow over and be nothing. You know the way things can go with these “Winter Storm Warnings.”

In other news, this little item just fell into my lap for Ellie (and to be fair, Leo will love it and I'm sure fight Ellie for it).

Just, I know, don’t ask.

As much as it pains me and goes against almost everything I stand for, I’m going to go ahead and give it to Ellie for Christmas/Hanukkah/whatever. All the princess crap just grosses me out but I fear that the more I fight it the more she’ll want it. It will be like my cousins who were denied sugar at home and so went on sugar binges at friends’ houses. I don’t want poor Ellie to feel the need to princess binge.

Breaking News

The best report card ever for Leo arrived today.

From his speech therapist:

"Leo is developing a sophisticated sense of humor."

It brought tears to my eyes. I've always felt you have to be smart to have a sense of humor. I know plenty of people with 46 chromosomes who lack the ability to laugh at the world, to be clever. I haven't doubted Leo's intelligence for a long time, and I certainly don't need to have someone else tell me how funny Leo is. I live it every day, but still. It's always nice to hear it from someone else.

I am so proud of my guy.