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.
