31 for 21, Day 24: The News is Good

Welp. Clearly I've failed at ye olde "31 for 21" this year. It was a nice thought, but it was not to be. There was a time when I could blog every day and this is just NOT that time.

But I've enjoyed the abundance of Down syndrome articles friends have shared in the last few weeks (courtesy of Down syndrome Awareness Month). There's so much good information now. So much positivity and hope. So much that wasn't there on that insufferably hot, humid day more than eleven years ago in the delivery room, when a doctor I'd never met gruffly muttered, "Well, we think he has Down syndrome."

This week, some of that good information came in the form of a podcast. I've started listening to them again, after an unintentional hiatus. I used to enjoy them when I was commuting (a hot coffee, a seat by a steamy window, a voice whispering eloquent writing or dialogue into your ear? THE BEST). Now my commute is two minutes long, the time it takes for me to drive home from dropping Ellie at school, walk to the kitchen table and pull out my laptop. So I've had to get a little more creative about finding the time to listen.

But check this one out. Writer and comedian Bethany Van Delft says, of her realization about her early days of having a baby with Down syndrome:

"Once I stopped fearing...I realized all moms cry a lot. All moms doubt their ability to raise this child. All moms worry about the future. I used to wish I could go back in time and get that test after all, but now I wish I could could go back in time to allow myself to feel the joy that a new mother feels, because that's what I was."


I've started listening to podcasts while running (the only time in my life when things are "quiet"). I turn the volume WAY up so I can't hear my pathetic gasps for air. Recommend!

Then came this story, about a new program in which young people with Down syndrome write "Congratulation" letters to new parents of babies with Down syndrome. Now, "Congratulations!" is not a word I remember hearing much (ever?) at the hospital when Leo was born. Luckily, I think the world has changed a bit since then, but this campaign is still amazing and much-needed. An excerpt from my favorite letter:

"PS. This baby is going to be the best thing that ever happens to you."


Leo, 18 months. 

Yes.

31 for 21: Day 11, FAIL, Try Again

Apple picking and pumpkin patching with the crew yesterday. It was a spectacular, perfect fall day and every year this particular outing gets a little easier and a little more, dare I say, fun?

OY. I am not doing well at this 31 for 21 this year. I had such high hopes for myself.

Let's go for some bullets, shall we?


-Leo is still difficult to understand speech-wise. I won't lie when I say I would have thought by now, at age 11, things would be clearer. I'm guessing this where we are for him and that breaks my heart a little because he has SO much to say. I suppose I should be grateful for that at least, right? But he's likely always going to be tricky (for strangers and people who don't know him well--most of the time his family/friends/teachers do OK but even we are still perplexed and yes, frustrated). However. I love that his speech is getting more advanced and interesting and mature. This morning for example, he busts out with "Speaking of apple bread..." (We were discussing what we could make with all the apples we picked.) I mean, "speaking of...?" Just love it.

-This week was a doozy for Ellie. It feels like the bloom is falling off the rose on the new school year: Apparently third grade is a "big deal" (this is news to me as this is my first time going through third grade for a 100 percent gen ed kid). Multiplication, long division, more and more standardized testing. The list goes on and on. There has been a lot of talk of feeling "pressurized" (Ellie's words) and worry about the speed at which math is going. I checked in with her teacher and she's doing fine, so this is likely self-imposed stress (she's hard on herself and a bit of a perfectionist. Hmm. No CLUE where she gets that, cough cough). Every night after Ellie finishes her homework (math worksheets and language arts and spelling) she does her computer homework for 30 minutes. One evening this week I waxed nostalgic about how after homework Ellie used to draw. "I don't have time for that anymore," she announced, matter-of-factly. Geez, kid. Just stab me in the heart, why don't you?

-I met a woman yesterday at Leo's soccer yesterday who has a 20-year old daughter with Down syndrome (she's in the same special needs soccer program as Leo). It's bizarre to think about the fact that I actually don't know anyone with an adult child with Down syndrome. How did that happen?

As we chatted, we realized our children shared a few teachers, so that was a fun little trip down memory lane. There are a few younger children with Down syndrome in the soccer program too and as we watched their antics we shared a few funny stories of our trials with Impossible Young Children with Down ("When she was little, I never sat down!" this mom recalled). Yup, sounds familiar. I tried to take off my journalist hat and just act like a normal, friendly mom (in these situations where I am starved for information I tend to ask a lot of questions) but I was dying to know: What's high school like for her? Does she have friends? (Answer: Yes, tons. Or at least, everyone seems to know her. Huh. That sounds familiar. How much independence does she have? Does she go home after school by herself? The answer to the last one was no, she still has someone with her at home unless it's just for a few minutes. That one was a little tough for me to swallow.

Her daughter is in her last year of high school and her mom is now looking at programs for next year. In her words: "You're pretty much on your own." The future. I can't can't even go there. But I know the drill. I opened up Facebook this morning and there was one of those sob inducing "Memory" pictures from five years ago: Six year old Leo and three year old Ellie at the SAME apple farm we went to yesterday. Um. EXCUSE me? Five years?

Apple picking, October 2010.

And where were the twins? Oh yeah, not BORN yet (I was actually pregnant the day this picture was taken but didn't know it). And the future that mom spoke about yesterday? It will be here before we know it. But for now I'll go back to my cozy spot with my head resting firmly in the sand.

Falling For Fall

We all forgot how fun it is to play in the leaves.

Oh man. I love this weather. Every year I forget how glorious fall is. Chrystal clear blue skies, the crispy leaves tumbling down. Yesterday we got home early from Ellie's soccer game and headed to the backyard. Well, the boys did. Leaves and trucks. Really, what else do you need?

And yes, Harry wore his pajamas all day yesterday. Don't you do the same thing on Sundays?

Day 2: Tidbits

1. It was a cold, rainy Saturday here today. It feels like October came and a switch flipped. Hello, fall. Joaquin (hurricane, that is) spared us thank goodness. Three years out and we're still all a little twitchy, after enduring Super Storm Sandy. Because you just truly never know.

All set for Halloween, already!

2. One week into school and the kids (mostly Ellie) started asking me when we could start decorating for Halloween. I broke my own self-imposed "Not Until October 1" rule after much whining and caved last weekend. Of course they had to throw a "Halloween Party" complete with snacks (Ellie can be quite industrious when she wants to be--see how she fetched everyone beverages and filled the Halloween bowls with snacks?). And yes, they dragged out all the costumes. 'Tis the season.

One costume possibility: Pizza Spider Man. Combining two of Leo's most favorite things. Have I mentioned I will never tire of his fantastic sense of humor?

31 for 21: Hello, Old Friend

I hardly read other people's blogs anymore let alone attend to my own blog, but I just saw that my friend Cate is doing "31 for 21" (blogging for 31 days of October) and thought, hey! That might be fun. And, um, challenging? Seeing as how I'm lucky to blog once a month let alone every day for a month. The last time I did this I think I had babies and prior to that I did it for years and years (also with babies) and well, what can I say? I'm getting older and (more) nostalgic.

We also won't talk about the fact that it's October 2 so I've technically already missed a post. Ahem.

I have a lot of ideas about what to write about. The trick will be formulating them into some coherent posts. I don't think about Down syndrome too much these days. Eleven years into this gig, Leo is just LEO. Sure I attend IEP meetings every year and certainly communicate with his "team" at school and teachers more than I do with the other children. But that just feels normal to me. I think having other children has helped considerably, in that I don't pin everything (bad) on Down syndrome. For example, when Leo was a challenging preschooler who ran away from me at every turn and refused to go to sleep at night (Ah, the good old days when I had to hold his door closed while he wailed), I blamed his Down syndrome. Fast forward seven years to TWO "typical" preschoolers who delight in running from me in the parking lot and not going to sleep at night.

Little did I, an inexperienced parent know that he was actually just being, you know, a preschooler.

More alike than different, indeed.

On Balance (HAHAHAHA), a New School Year and Free Reign Chaos

I'm coming out of another work fog that makes me remember that I am a human and that there is life outside of work. It also makes me question how I am handling this Working From Home gig. It's hard, yo!


Then there was the day a few weeks ago that the house internet was down in the midst of a huge work deadline (of course it was!). In the afternoon we all trudged down to the neighborhood "free" wifi spot (Evil Fast Food Restaurant) where I was successfully able to download my much needed document. All was well that ended well there, but not without quote a bit of panic and stress on my part. I think it's clear from the "toasting" of sundaes (seen here) who the winners were that day.

It's all hard:

-Working at the office/commuting/not seeing the kids for ten hours/getting home and scrambling for all the different people begging for attention/feeling guilty because I don't spend enough time with them and the time I do spend isn't "quality" time and I often feel impatient and burned out
-Working from home/carving work in between all the other home responsibilities/seeing the kids for ten hours at a time/getting home and scrambling for all the different people begging for attention/feeling guilty because the time I spend with them isn't "quality" time and I often feel impatient and burned out

But the good thing about being ridiculously stressed and overwhelmed is that when you no longer feel stressed and overwhelmed, you feel Reborn!

After two days on and several days off (Hi, Jewish Holidays), we are officially Back in the Business of School (except for one day last week--Hi Another Jewish holiday). In fact this week, the last one of September, is actually the first full week of school!


Oh, Hiiiiiiiiiiii sixth grade. How's it going? (First day)

Leo is settling into middle school. After a few bumps (on the second week of school it rained. Leo has developed a severe phobia of rain and storms (?) and that day, I was on and off the phone all day with the school nurse, because Leo had come to her with a stomach ache. Several times). We have been talking and talking (and talking) about the importance of rain--to the planet, to the people, you name it. The other bump was that did you know that in middle school they serve pizza Every Day? Leo was confused on a Tuesday when he did not get pizza (because in fifth grade, pizza day was Friday). Sheesh, life is always throwing curve balls, isn't it? Next week he starts some extracurricular activities which I'm excited about (and so is he!): Art Club and Science Club. On the horizon is try-outs for the basketball team (gulp!).


Behold, third grade and Last Year of Preschool x 2

No big news on third grade (fine by me!). Ellie likes her teacher and is happy that one of her good friends is in her class (again). She's started soccer and is enjoying it and Girl Scouts (Brownies) starts again in a few weeks.

Lucy is excited to be in the "Big Kid" class in preschool. She has the teacher Ellie had her last year of Pre-K, which is fun and familiar. After a few relatively smooth months (it's all relative, not sure if smooth is the best word) Lucy seems to be entering another tricky phase. It seemed to kick off with the transition to big kid beds. Maybe it's too much change at once. I could just really do without the tantrums about television and the running away from me in the parking lot. And the driveway. This too shall pass, I know. The thing is, she can be SO SWEET. And mature! And sensitive. When Erin had some oral surgery recently, she came over to her and crawled into her lap and said, "Mama? Does your mouth hurt? I'll be extra sweet to you."

On the first chilly morning of fall I dug out my old beloved khaki trench coat which she complimented me on, calling it my "fancy" coat. When Harry is running around the bedroom without pants on at bedtime and she's quietly brushing her teeth with her legs folded crisscross applesauce, she asks me, "Mommy? Am I being a very good girl?" Jekyll. And. Hyde.


And just like that, we said goodbye to cribs (I know, four is old to be in a crib but if you have twins, you get it). Do not, I repeat DO NOT be fooled by their apparent calm. Cribs for everyone!


I was admiring Harry's Transformer "dollhouse" and "family." "It's NOT a dollhouse family," he replied, incredulous. "It's an ARMY!"

After a month with Lucy at her school, Harry was a little unhappy about having to go back to his other school (where he continues to get the speech therapy that he's happily growing out of the need for but I'm not arguing with free preschool!). His disappointment passed quickly--he now seems to really enjoy where he is--all last year he would ask in the morning, "Is it a school day?" And when he found out it was, his face would fall a little. But now, he has a little spring in his step in the morning and bounds off the bus in the late morning, talking about a handful of little boys he played Transformers with or a book they got to read in library.

And then there's me. Four years in and I'm STILL not accustomed to the chaos of having twins. One four year old is one thing. Two? Right now what I'm struggling most with is listening. As in, they don't listen to me. Or at least, not as much as I need them to.

I am a person who likes order. Routine. And did I mention quiet? OK, I have mostly accepted the fact that our house is the opposite of quiet, but that doesn't mean I don't find it all too much to take sometimes. It seems like for the most part, ever since we converted the cribs to toddler beds, bedtime, or more like, around 4pm every day, evolves into something out of an episode of "Super Nanny, "but BEFORE Super Nanny swoops in and makes everything OK. It just feels completely out of control. Jumping off beds. Ignoring simple, completely reasonable requests like, "Can you please go to the bathroom and put your pajamas on?"

We're trying a few things that are hopefully helping (awarding "coins" for good behavior that they collect to earn a small prize at the end of the week). I HATE material bribes but you do what you gotta do right? I'm also hoping that maybe the novelty of being "free reign" at bedtime will wear off soon.

And you know, there's the flipside of course. These two incredibly frustrating, challenging, adorable, interesting, smart hilarious people. Just as I did the day they were born, I still marvel at them. TWO of them.


To quote Harry, who said, right as I was taking this picture: "There are too many people in this pool!"





Well, four of them.

This too shall pass, and all that jazz.

Summer 2015: What a Difference a Year Makes

Summer is winding down.

The dog days (hello stretches of 90+ days and insufferable humidity, would you please just bring us a nice, cleaning, good old fashioned east coast summer thunderstorm please?) are upon us.

If I had to sum up the summer in one sentence it would be this:

What a difference a year makes.

There were loads of milestones. I frequently took the twins (and a big kid or two) to the town pool on my own this summer (see above). That felt like a major accomplishment.



I'm not potty training twins.

No one naps.

Everyone is (for the most part) calmer.

I touched on this a bit at the end of last summer, this feeling that I am a fifth wheel and they just don't need me the way they used to (by the way I am not broken up about this and say it without a single tinge of melancholy). I mean, of course they need me. But so much of the time I find that I am mostly doing maintenance and upkeep around here (filling the dishwasher, granting snacks, anticipating the next activity--What in the HELL am I going to make for dinner--and do these people REALLY need to eat AGAIN?).

This is partly my own doing (when they are all home or even when it's just the three of them--usually Ellie, Harry and Lucy in the afternoons, since Leo has been at an all day camp for the last month) they tend to get involved in elaborate activities (vet hospital, mountain lions, Play-Doh, to name a few). For the most part, it's very easy for me step aside and just let them do their own thing (listening with a half an ear of course).

By the way, Ellie? World's best au pair/mother's helper. I seriously could not ask for more. She has saved me more than a few times this summer when I've had to meet a work deadline and the twins are clamoring.

Ellie made us crepes for dinner from her new cookbook (with fresh strawberry topping). Eight thumbs up!

This summer, Leo turned eleven.



Ellie turned eight. She attended gymnastics, art and invention camps.


At the pool on her birthday she had a hot dog AND ice cream. I mean, you only turn eight once, right?


Ellie also learned how to ride a bike.

Leo went on his first overnight at camp (on his birthday, no less!).


Every year on Leo's birthday I have the same thought: that I couldn't be more proud of my boy, and that I wish I could go back in time to that terrifying day he was born and say, 'Self? Leo is going to be JUST FINE. In fact, the day before he turns eleven, he'll ride a jet ski for the first time, and on his actual birthday? He'll go on his first camp overnight.


School, together. Day 1.

Lucy and Harry had milestones too. During the month of August, since Harry's school was closed, he got to attend camp (cough, cough glorified preschool) with Lucy. I was surprised by how much they enjoyed being together (I always assumed they liked the break from each other that separate schools afforded since they are togetherallthetime). But no. Every morning this August, the first words out of Harry's mouth are: "Do I get to go to Lucy's school today?" I actually think he might just be in it for the LEGO bricks in Ms. Jamie's room but I could be wrong.



The thing that is so crazy to me is that the twins are now, the same age as Ellie was when they were born. Maybe it's because there are two of them and they rile each other up so much of the time but they just still seem so--Little. Young. Yes, babyish.


Summer, 2011. Sunrise, Sunset.












We still have a little over a week until school starts. It's hard to believe this is the twins' last year before "real" school (kindergarten). It's hard to believe Leo is heading off to middle school. We received Leo's bust "ticket" for the year and he'll be picked up at 7:30am (YIKES). That's going to be interesting.