On IEPs, Memories and Effing Cancer

Please excuse jelly face.

Today was Leo’s IEP meeting. It went very well. He’s doing great, making progress in all subjects. He can read 110 words (!) and especially enjoys science and social studies. His handwriting is improving (though I've been proud of it for a long time) and he consistently scores 100 percent on his spelling tests almost every week (my boy!). He goes to the bathroom independently and his behavior (which has never been a problem at school, thankfully) is even better than it was last year.

The only real issue is he’s been more “fidgety” lately, sometimes having a hard time sitting still and staying in his chair. The funny thing is, he still pays attention and participates, he just has to move around (play with his fingers, wiggle in his seat or stand next to it) while doing so. His teacher said she thought the long winter and lack of outdoor recesses may be contributing to this. In any case, they put a rubber cushion on his chair which seems to be helping to keep him more stationary. Hopefully spring will come SOMEDAY and these poor children will get an outdoor recess before the last day of school!

His speech is coming along. He has longer, more complex sentences and is talking a ton. But still. He’s very hard to understand. I’d be lying if I said this didn’t concern me. I know that all kids (especially kids with DS) excel in certain areas and have bigger struggles in others and speech has always been Leo’s biggest hurdle (and he certainly has a long list of successes for which I am so grateful and proud). But we were at an event on Sunday with many of Leo’s old classmates from his former school (all kids with Down syndrome) and I was honestly shocked by how amazing some of the speech was, how distinct and clear and, well, “normal” sounding. I’m not sad and I’m not comparing, it is what it is. It was just so apparent.

I feel bad for Leo because he has SO much to say and he’s such a funny, smart guy. I want the whole world to be able to understand him and get to know him. I should add that he in no way seems to let any of this get him down. He certainly has a way of getting his point across. And you should hear Ellie and his looooong debates and discussions about all sorts of topics, from princesses to pirate ships.

On a lighter note: Leo’s teacher and therapists all remarked on what an empathic guy he is. His speech therapist noted his “strong moral compass.” He’s always the first to give a pat on the back or stroke on the cheek when someone isn’t feeling well. This week the school is doing a unit on bullying and manners which involved a theater group coming in to perform skits portraying people being "nice" and "mean." Apparently Leo was outraged at some of the behavior portrayed in the skits. He was scowling and glaring at the “mean” actors and shaking his head with disappointment and disapproval.

The meeting came to end and Leo’s classmates began to arrive (Leo skipped the bus this morning and came with me, working on the computer across the room while we had the meeting). The announcements began and Leo was absolutely tickled that I was there to recite the “Pledge of Allegiance” with his class (he even helped me put my hand to my heart, in case I’d forgotten). More announcements followed after the “Pledge,” including a reminder that there would be a moment of silence for the director of special education, who died yesterday.

I was stunned. I knew she’d been ill (cancer). I knew she’d had surgery and taken a medical leave, but she came back. I had no idea how sick she had been. She was a wonderful woman. Full of life and humor—a “big” personality. She helped me a lot last year when I was having some issues with Leo’s transportation. She was a real advocate for the kids too. During a time of huge budget cuts for our town's education services, she assured me everything would stay the same for Leo and the kids in his program. And every time I talked to her she would tell me how much she and everyone else loved Leo and how “the last time she saw him he gave her a big hug.”

She was 54.

I just read her “legacy” book from the Newark Star Ledger, which followed her obituary. This is my favorite entry so far:

“Betty I know you are up in heaven where the onion dip bowl is always filled and the Raiders are on the televison 24/7. You had such a gift for making life more festive. Peace be with you old friend.”-- Judy Dunn

Every time I hear of someone dying of cancer (especially someone relatively young), of course I think of my mom. And my mom certainly pops into my mind, a little flash, I think, just about every time I go to Leo’s school. It’s a combination of things, the first being that I sometimes still can’t believe I’m someone’s mom, that I’m like, responsible for someone. Then there’s the place: an elementary school, that was my mom’s domain, for over fifteen years. She wasn’t a born teacher but she came to like certain aspects of the profession, I think. And at the very least she loved her kids (well, most of them). And one day she was teaching and doing lesson plans and correcting journals and the next day she called in sick and she never went back to school. She never got to say goodbye to her kids. And it will always break my heart to think of that.

I remember sitting in my little apartment on the upper west side of New York City on a cold March day in 2000. My mom, in a rare, unguarded moment (she was very strong and stoic throughout her illness) was crying to me over the phone, thousands of miles away in Oregon.

“I’m just afraid I’m never going to get to go back ,” she said, between tears. “That I’ll never get to say goodbye to my class.”

I dismissed that talk as “silly”—that of course she would see them. What else could I say? I didn't want what she said to come true.

There is a book that was given to my step dad and me after she died, a three ring binder of sympathy letters and cards and drawings by what seemed like hundreds of elementary school children. There were also notes and letters from her fellow teachers. I could hardly look at it, at the time. But it’s something I know I’ll want to have, someday.

I think when I’m pregnant I push the thoughts of her away more. It’s too much. I just can’t go there. My mom, who never thought she would be a grandma, on the cusp of being a grandmother of four. I Just. Can’t. Think about it.

I just hope Ms. Maddalena had a chance to say goodbye.

Babies, This is Your Big Brother Speaking

So it turns out this little endeavor provides an endless source of fascination for Leo. Several times a day he walks over to me and just lifts my shirt up. He talks to them. Points to each one (he still remembers how I showed him where "A" is and "B" is). He can't seem to get enough. Let's hope the interest lasts.

Green Day

"Go pick out your clothes," I heard Erin call to Leo this morning. She blessedly let me sleep a few minutes later than usual and had motivated Leo to get ready, cheerily, as only she can do.

"He has to wear green!" I prompted anyone within earshot. Erin repeated my fashion "suggestion" to Leo.

"Oh YEAH!" agreed Leo, as though grateful for the reminder. I have to say, they do an absolutely fabulous job at school of indoctrinating those kiddos with all the holidays. And to think, I was worried there would be a struggle over the fact that he owns no green Super Hero shirts (I remind you that's all he'll wear these days--yesterday there was an all out war over the fact that his beloved Bat Man shirt was in the laundry--the horrors!). But would you look at that? He happily arrived at my bedside, minutes later, clad in an adorable green plaid button down. All grins, and full of Irish pride.

Sorry, no pictures of Leo. But Ellie got into the spirit too. Yesterday I told her she had to wear green today or someone would pinch her. She gasped and her jaw dropped, her mouth forming the shape of a concerned little "O."

***
In other news, Leo's teacher wrote something lovely in his communication book yesterday:
"Leo did something so nice today! When he was getting off the bus it was raining, so he insisted Chloe [one of his bus buddies] get under his umbrella. So sweet!"

Aww. And also, I guess that balances out the other note I received, about how he got in trouble for crashing into Mrs. B (on purpose) with his scooter at P.E.

Hey, you take the good, you take the bad, right?

Happy St. Patrick's Day to all!

Edited to add:

Of course! Green Lantern! Thank you, dear readers. Next year, Leo. I promise.

When it Rains, it Pours

You know it’s bad when you look at going to work as relaxation.

I’m hoping this week is better than last. Leo was up and down illness-wise. Thank goodness it was nothing serious, just enough to really just inconvenience and exhaust us all, so I really can’t complain (although, watch me!). He was home from school Monday and Tuesday with a stomach bug, returned Wednesday and Thursday. Then, Mom of the Year got the email from Mrs. L on Thursday afternoon. I knew it was bad before I even opened it. The subject line was: “Leo’s cold.”

Uh oh.

Yes, the boy apparently hacked all over everyone on Thursday. He was taken to the nurse’s office twice for a temperature check (normal). His sweet classmates reportedly "pat him on the back with each hack," according to Mrs. L., who never came right out and said it but the message was clear: keep him home on Friday. And so I did. I honestly didn't know it was that bad. Thursday morning I assure you, he was bouncing off the walls and seemed more than ready to be back at school. He practically skipped to the bus.

I worked from home on Friday (always an interesting endeavor). It was then that I also discovered that our dry-since-last-year-finished basement (yes, yes, we have carpet, I know, who has carpet in their basement when they live in the flood zones of northern New Jersey? Answer: We do) was no longer dry. You may have heard, we had a bit of flooding.


GROAN (with the obvious caveat that it could have been much, much worse). And obviously, in light of Japan and everything that’s going on there, well our little basement woes seem mightily insignificant.

But still. We all know what we did this weekend. And by “we” I mean, Erin. Ripped out wet, heavy carpet and moldy wood. Scrubbed basement floors. Hauled wet carpet and moldy wood to the street. Yes we have a sump pump. And a French drain. Isn’t home ownership just awesome sometimes?

I miss our cozy little soft carpeted basement but really, that carpet had to go. We’ve already had it professionally cleaned once, when a pipe burst last spring. We’ll (I mean, Erin) will paint the basement floor a cute color (we’re thinking maybe red?) and get a few more area rugs. It’s going to be fine.

***

In other news, you know how they say that the reason you don’t sleep well during pregnancy is it’s mother nature’s way of preparing you for all those middle of the night waking newborns? Well, I’m thinking, if you’re pregnant, and you already have small children who don’t sleep well, shouldn’t you get a pass on the whole “waking up in the middle of the night for no reason” thing? Most nights I’ve been waking anywhere between 1 a.m. and 3 a.m. for a good solid hour. And I just can’t get back to sleep. And it’s a real drag. True, many nights, someone (small) wakes me. Leo kicks me in the head or crashes his tiny skull into mine (he’s fond of sitting up while completely asleep and then tipping forward, often onto my head). Or Ellie arrives bedside, whispering, “Mommy, can I get into your bed?”

But the waking up for no good reason at all? Just seems cruel. And no amount of Stumptown seems to be helping.

On a lighter note, we had a fun play date yesterday (I think the kids were thrilled to be out of the house after Saturday's full day of flood repair). Leo was loving a little toy tool bench and after some assistance with the tool belt, figured out all by himself how to put the tools in the little pockets, looking like a lost cast member from "This Old House." Ellie, upon noticing my interest in Leo's play, announced from across the room, "I want to be a tool!"

Sometimes? It's just really hard not to laugh at your kids.


This picture has nothing to do with this post (and it's terrible quality) but I love how it illustrates Leo's wonderful imagination. See how he's hung his dragon from the Lego tower (which is apparently on fire)?

Catch-Up

Just going to jump in here. I hate going long stretches without writing. But enough about that.

So.

We took Ellie to her first play, “Beauty and the Beast” (a musical, but not the Disney version).

Leo, as you’ll recall, is a theater veteran. I’d say it was a success though the production was decidedly low budget and no where near as good as the show Leo and I saw (I swear the beast costume was a fox or a bear—there was absolutely nothing beast-like about him and Erin and I had a good chuckle over “Beauty and the Fox.”) Anyway the kids didn’t seem to mind.

Ellie had her first ballet class last weekend.

No, that blob is not my thumb, it's some dad. They close the door shortly after the lesson begins so that's the best I could do. Ellie is in the center in the black leotard and white tights, the poor dear is the only one without a ballet skirt (don't worry, we rectified that immediately after class).

She has been asking to take a dance class for some time and it's been hard to find one that doesn't conflict with Leo's swimming but I finally found one and felt victorious!

I’m not sure what was more exciting, the class, the new white ballet shoes (here she is getting her ballet shoe "fitting") or the little pink outfit (leotard/skirt combo) I let her pick out from the dance school’s “store.” She pirouetted through the house and took that outfit on and off about seventy five times between Saturday afternoon and Sunday night. And almost every morning since that class, the first words out of her mouth upon waking are "Do I get to go to ballet today?"

If there’s anything cuter than a three year old in a black leotard and white tights, I’m not sure what it is.

Erin had a birthday, I had a birthday and Leo celebrated by getting some kind of very unpleasant stomach virus. He even woke us up at 12:30 a.m. birthday morning to start the festivities. Poor guy. Of course, I had just commented to someone aloud how we’d remained reasonably unscathed this winter (while furiously knocking wood) and of course, wouldn’t you know it. When Leo is sick, his energy level plummets to the point where he is unrecognizable. He’s this eerily agreeable, compliant, passive little person.

Also, he lies on the couch, which is SO not Leo.

Thankfully, he seems to be on the mend, though the stomach thing morphed into a cold.

For my birthday (which fell on a Monday, really, shouldn’t there be a law against Monday birthdays?), Erin made me this which was A-MA-ZING. I threatened to put my face into the entire bowl and just call it a day but I restrained myself.

In Babies News, these two are trucking along and currently weigh an estimated 1 pound, 13 ounces each. That seems huge to me (I mean, at this stage in the game) but what do I know?

Not sure if you can make it out but the sonographer captioned this one "Two Heads Are Better Than One." Awwwww.


Only one baby was feeling particularly photogenic today. This is "Baby B." That's a leg, in front of the face.

A less exciting shot, but don't want anyone to feel left out, I present, "Baby A."


Yesterday when Leo was home sick he and I watched an episode of “Make Room for Multiples” which he was absolutely fascinated by. He’s getting very interested in the belly (which is admittedly, hard to ignore) and has been able to feel some actual kicks. I think he’s still scarred from seeing me suffer from morning sickness, because he’s still talking about the babies making me ill.

He kisses the belly several times a day and then me. Seriously? Leo has the biggest heart of any child I’ve ever known. His empathy and sensitivity is just boundless, it seems. The other night when he was sick and I lay down with him before bed, he pulled me into his chest, holding me, as if I was the one who needed a little extra comfort and care.

Just Don’t Say It

If you read this blog, you probably don’t use the word “retarded” as a humorous, descriptive adjective (you know, OMG! That’s so retarded!) But I’ll make a confession. Before I had Leo, I used the word from time to time. I just didn’t think about it. It was as simple as that.

But now I have Leo. And I get it. Boy, do I ever. And it never ceases to amaze me the number of intelligent, thoughtful, educated people who continue to say that someone or something is retarded. I don’t think most people even realize what they are saying, and that what they are saying is hurting people. And also? If you hear someone else say it? Call them on it. Tell them why it's not OK (believe me, I know this is sometimes awkward and uncomfortable, but so is hearing that word).

Regarding the whole “freedom of speech” argument? Millions of people find this word offensive. Hurtful. Isn’t that enough to take the simple step to eliminate it from one’s vocabulary? Retarded, truly, has to be one of the cheapest of shots.

In discussing this, I’ve heard friends and acquaintances say “but I don’t think of Leo as retarded!” As if that is some kind of defense/excuse. I understand where they are coming from and I know they mean well. But the fact is, the word “retarded” is hurtful. There are some amazing words out there. Retarded is not one that needs to be used.

All of this to say, today is Spread the Word to End the Word Day. Let’s all agree to not say it, OK? Take the pledge. If nothing else, do it for this guy:

Leo, circa 2008, age four. How can you say no to this face?

Leo and I thank you.