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.