Report Card

I've been pretty quiet about Leo's academic life this year. Not because it's been bad or anything to be ashamed of, more that it's been a little uncertain. That, and he's getting older and I'm feeling a bit more self-conscious about blabbing all the details of his life all over the Internet. But allow me to blab a little, because I think there's something important here.

Earlier in the year there was some concern on the part of some of the members of Leo's "Team" (service coordinator (school psychologist) and teacher), about his placement and whether it was appropriate. Emails were exchanged, phone calls were made.

For the first time in his academic career, I dreaded Leo's IEP meeting. When the day finally arrived, a few days before Thanksgiving, it felt looong and tense. I fought back unhappy, uncomfortable tears a few times, scanning the stuffy, overheated room for a tissue box--don't all IEP meeting rooms contain tissue boxes?--with none to be found. In the past, all my IEP tears had been happy, choked-up-with-pride, emotional ones.

I'll be the first to admit it: We've been very lucky to this point. Leo's IEP meetings have been veritable love-fests. Leo is so wonderful. Leo is such a hard worker. He's always clicked with his teachers, who've never had anything but good things to say about him (believe me, I've pestered them for the bad stuff: Behavior? Backtalk? Nope. Lucky us he seems to have always saved all the not so fun stuff for home--to be fair, as many kids do).

The gist of it was, there were grumblings about moving him "back" to an old placement, to a classroom neither Erin or I felt was appropriate. His teacher was concerned that he was getting "frustrated" and she questioned whether it was the right setting for him.

Luckily, I was not completely blindsided by the Team's concerns, since Leo's teacher and I had spoken over the phone and via email a few weeks prior to the IEP meeting. But of course, since I'm me, I immediately panicked and shared what was going on with several friends of mine, experienced moms in the Down syndrome community.

And the words of one of my favorite "Down syndrome moms" rang true, and were exactly what I needed to hear:

"If I eliminated everything in my life that was frustrating, there wouldn't be much left."

Right? I mean, OK. He's frustrated. What kid isn't frustrated in school sometimes? What person isn't frustrated in the world sometimes? Welcome to me in third, fourth and fifth grade math (well, pretty much my entire math career, but that's another post). The key is figuring out ways to help him. Put supports in place. Investigate where he's struggling and what can be done to assist him (without of course helping him too much). To immediately send him to another class just felt way too easy. It's not that I don't want him to succeed, of course I do. But I also want him to be challenged and not immediately freak out if, for the first time in his life, he's not doing everything he's supposed to be doing at every single moment.

So that's what I told the Team.

"If I eliminated everything in my life that was frustrating, there wouldn't be much left. It needs to be OK for him to get a little frustrated. But let's try to help him succeed."

I just feel like there is this rampant tendency to put kids with special needs under this incredibly unfair microscope. If they don't quickly and quietly conform to exactly what's expected of them, they're apt to get a One Way ticket to Plan B or C or just Something Else, something that tends to also be easier for the Team. Meanwhile, a typical kid would be given the room to screw up a little, to find their way.

And you know what? I feel like the Team heard me. And I think they came around to agreeing with me. One person noted the importance of the social component in Leo's current placement. Another pointed out that the "other" placement would be a huge step backwards for Leo in several subjects.

Don't get me wrong. I am not in denial that Leo needs extra help. I am not about putting him in a certain class for "appearances." And if the time comes, I'll be happy to acknowledge he's in the wrong place. But in my heart of hearts, I do not believe that was the case here.

Things weren't (and aren't) perfect over night. There were several notes back and forth about missing homework (Leo needs someone to help him remember to pack all of his homework at the end of the day). I'm still worried about how hard it can be for him to focus and how easily distracted he is. A big concern has been math and how he's had a difficult time retaining information (he'll learn it and then seems to forget it a few weeks later). 

But this came home the week after Thanksgiving:

And you can imagine my relief when I opened Leo's report card last week and read this, from his teacher:

"Leo is adjusting well to the rigorous academic demands of fourth grade…He is a happy boy, never complains and tries his best at all times. You should be very proud of him. I know I am!"



Who knows what tomorrow, or next month or next year will bring (although we did determine his placement for fifth grade--GULP--and I feel good about it).

And for now, I'm back to happy tears.

 

Live, From Third Grade

Leo's math teacher sent me more pictures this morning.

I love that she does this.

I also love the expression on Leo's face in that first shot.

"He looks so proud!" I replied in an email, to Mrs. L's pictures.

"He Is," Mrs. L wrote back.


These show Leo using the class' new smartboard. The school was awarded a grant which gave one to every classroom in the building. For those who don't know-and I didn't until last week's parent-teacher conference-it's essentially a giant, interactive computer screen and has rendered televisions/DVD players and overhead projectors (here's where I show my true age!) obsolete in many classrooms.

Speaking of the parent teacher conference, Leo is doing well at school. His teacher thinks we made a wonderful decision placing him in this new setting (as of September, we pulled him out of the "cognitively delayed" classroom and put him in a "language and learning disabilities" class).

All in all, it was a pretty uneventful conversation with the teacher (which, I guess, is what you want?).

*He's making friends, adjusting to an increased amount of responsibility (for the most part, he's in charge of his own schedule, for example he knows at 9 a.m. he has "inclusive PE," with the rest of the third grade, at 11:30 he has art, and so on).

*He is, according to his teacher, Mrs. F., one of the best readers in the class.

*He's making friends. One of his most loved activities is the morning "Snack and Conversation" where the students sit in a circle (and yes, have snack) and talk about a prompted subject: "What I did over the weekend" or "The Best Thing I Did On My Summer Vacation." While the students do sometimes have difficulty understanding him, they all sincerely try to figure out what he's saying. As they get to know him better, it's becoming easier.

*Meanwhile, we are seeing a huge improvement in Leo's speech since the start of the school year and I can only presume it's related to the fact that he's surrounded by kids with much better speech and more sophisticated vocabularies. Leo's speech is becoming more natural, more, conversational. At night I walk in the door and he asks me "How was your day, Mommy?" It's little things: he's using words like "quietly" and "carefully."

*The subject Leo continues to struggle the most with is math. I'm quite confident this is genetic and has nothing to do with extra chromosomes since I was an absolute disaster in math too. "Is he doing third grade math?" asked Mrs. F. "No, we're going much slower for him because it's taking longer for him to figure certain concepts out. But that's just fine and he's progressing and that's exactly what we want to see."

*His favorite day is still Friday, when Mrs. L., the math teacher brings in her "therapy" dog Finn. The children read to Finn and visit with him. Leo is his Number One Fan (and yes, Mrs. L. promised to send me a picture she next time Finn makes a visit). Stay tuned.

Patterns: The World Is His

Leo's math teacher emailed me some pictures this morning (How awesome is that? I love a little window into his academic world.)

"Look at the patterns Leo made using triangles and diamonds!" wrote Mrs. L.

Leo is so funny. Whenever he is particularly proud of something that he's showing you, he does this funny little thing where he puts his hands on his hips and crosses one leg in front of the other. I have no idea where he learned it. He's a show-man, that's for sure.

He's also, as you can see, clearly quite modest.

He also, thankfully, boasts a fantastic sense of humor.

A few other bonus school-related photos:


A perfect spelling test (last week)! I'm seeing a definite improvement in Leo's handwriting.


And, the requisite Columbus Day project. He was very proud of this, and gave us quite the lesson about Columbus and all his "accomplishments" over dinner. He told us about each ship, to which Ellie responded: "The Nina, the Pinta and the Pizzeria?"

Of Kindergarten Previews and IEPs and One Big Giant Update Smorgasbord

It has been ages since I posted a good update.

Last week, Ellie attended her kindergarten "orientation." Word is, this gives the school a chance to meet the kids so they may properly balance the classes.

Ellie's new school is about five blocks from our house, a perfect little walk. I'm a little sad that she and Leo won't be at the same school. (The program he's in isn't offered at our neighborhood school.)

Ellie took her place by the list with her name on it. She seemed a little nervous ("Are you gonna come right back and get me when it's over?" but was relieved to see a familiar face from her preschool.

And yes, because I am a giant sap, I did get a little teary thinking about how quickly five years goes by and how The Days are Long But the Years Are Short and I'm going to turn around and be standing in that same courtyard watching Harry and Lucy line up for their kindergarten orientation and OMG Stop the Train I Want To Get Off...

Also? This is my first foray into "General Education" where you, you know, just sign up your kid for school and no meetings or evaluations by therapists and specialists, they just...go.

While Ellie did worksheets and drank a juice box, the parents were herded into the library for a talk by the principal about the curriculum and then we got the PTA sales pitch. Eight years into this parenting gig and I still often feel at these sorts of things that I'm a kid and what am I doing in a room full of all these parents? These grown-ups.

***

Leo got another hair cut.

I just want to reiterate how proud I am of him, that he can get a hair cut (or a blood test! I forgot to tell you about the blood draw last week that he sat stone still for) without a huge (any!) amount of stress or bargaining or bribery (OK, there is the little matter of the iPad that he holds during hair cuts but who cares? Bring on the iPad!) And best of all, I don't have to wear my combat boots or shin guards for these kinds of events anymore. Kids are just amazing. They're one way (in this case, terrified of anything hair cut or medical related), and they're one way and then one day? Something just clicks. And they change. And they surprise you in wonderful ways.

Scored this train table at a garage sale a few weeks ago. The giant box of Thomas trains went unsold so the seller threw those in too, when we went back to pick it. I've literally been searching for this kind of deal for years. The table has been a hit. It's one of the few toys Leo and Ellie play with together seamlessly (we put the table in Leo's room so that the babies can't get involved in the multiple, tiny pieces).

In other Leo news, we had the IEP meeting to discuss the next school year's placement. First of all, third grade? How did that happen? We're making a big change this fall. Leo will be moving from a mostly self-contained class of MCI ("mild cognitive delays") to the LLD (Language and learning disabilities) class. I got the sense from everyone involved that Leo's is a trajectory that doesn't happen often. Once MCI, always MCI? Anyway, acronyms and labels aside, we all agree this should be a good move for Leo. He will be challenged for sure and rather than be "safe and cozy" where he's been, his therapists, past and future teacher are excited about giving him the chance to spread his wings a bit.

Obviously as his mommy it's difficult for me to be completely objective but I've felt for some time that what holds Leo back the most is his language (intelligibility). Yes, he's a bit immature for his age too but this boy is smart. Yes, he learns at a slower pace and needs extra support, which is why the LLD class seems like a great fit. I've talked to many parents of kids with Down syndrome about this and have heard that there's a growing opinion out there that a lot of kids with Down syndrome aren't cognitively delayed but rather that they have learning disabilities.

It's all semantics I guess and it's easy to get sidetracked by all of that. What matters is that at this moment, Leo is poised for a big change that we think will be wonderful for him. His current teacher, the one who has seen him from kindergarten to this new step, she and I had a good little cry at the IEP meeting ('They should stock tissues at these!' I joked) when the school psychologist started in on how far Leo has come since his first day of kindergarten when my biggest concern was whether or not he'd escape out of his classroom (am I glad those days are over).

We have always wanted to challenge Leo, to give him the opportunity to "rise to the occasion." I think this new classroom is definitely an example of that.

***

Lucy is a cruising fool. Walking feels imminent but who knows. Her nickname for now is Pull To Stand.

Harry has gone from the butt scoot to the more traditional crab crawl. Also he is getting his molars (see above). One word: Ouchie. Also: Misery.

They have the whole downstairs to explore and yet I often find them like this, back-to-back inhabiting the same tiny space. My little bookends, so different, yet drawn to each other.

Change of Plans: Update

Leo started spending time in his new classroom at school. He's doing language arts (reading and writing) in the "Language and Learning Delays" classroom. Am I the first parent in history to be thrilled that their kid is in this classroom? It's a big step for Leo and we are so proud of him. Friday he came home with some worksheets that included synonyms which made me teary because, synonyms? Seems hard. I don't think I was doing synonyms in second grade. His teacher emailed me and said that Leo was very excited about the fact that he has his own desk in this classroom. Of course he was.

In other news:

Hi, my name is Lucy and I'M TEETHING.

You'll notice the alfresco Exersaucer photos here because? It was 65 degrees here today. In January. Considering last year at this time we had oh, about two feet of snow on the ground, I am not complaining, not at all.

Yup, still teething and yet, happy.

Change of Plans

Oh Leo. That boy just slays me. I go on and on about his speech and how worried I am about his intelligibility but he I have to say, he is doing great. We're suddenly having these conversations. And he's cracking jokes. And I'm having these little visions of what he's going to be like as a young adult.

This boy drives me crazy sometimes but he happens to be one of the most interesting, creative people I know. See above. Note the snowmen on the slide. He's wild about those snowmen, which I bought pre-kids--I know, I know, They're Hallmark: Don't Judge-- (and little did I know I'd someday have a little boy who loved singing Christmas toys year-round). He likes to "place" them where he's playing. Before I snapped this shot, the snowmen were on the patio table across from him. So the snowmen could see Leo? So he could see them? Who knows. Sometimes I find the snowmen sitting next to him on the couch when he's drawing, or facing him when he's playing Legos on the living room rug.

And I've decided a couple of things about Leo. Sure he takes a little longer to do certain things. To wit: This morning I sent him to the pantry to get more paper towels and he he took so long I'm pretty sure I could have gone to the store and bought more paper towels. No, he's not your "typical" seven and a half year old. But he is smart. Wise. Incredibly sensitive. The only thing "wrong" with him? He is the most stubborn person I have ever met. Once he makes a decision about something, look out. It's a long, sometimes painful (maddening, infuriating) road to convince him otherwise (it could be anything from wanting cheese crackers when there are none to refusing to get on the school bus in the morning).

Interestingly enough, the recent school evaluation (conducted every three years to determine proper placement/eligibility) we've been waiting for had a similar finding (except for the maddening, infuriatingly stubborn part). Leo's reading close to grade level. His receptive language is that of an eleven-year-old. And we're in an interesting little predicament now because for the past two and a half years, Leo has spent the bulk of his day in a self-contained classroom for "mildly cognitively delayed."

And now? Seems he's not technically cognitively delayed. Perhaps learning disabled or language delayed (I'd argue he has articulation issues vs. delays but whatever). The point is, Leo's "team" (teacher, therapists, school psychologist) are faced with something they say they've never really seen before. And they are working to create a new program for Leo. It's looking like it will probably be a combo of a typical classroom, some time in his present ("cognitive delayed") class and some time in the "language and learning delays" room.

And for the first time in the history of meetings with Leo's team, when I uttered the words "full inclusion," I was met with smiles and nods, rather than shrugs and "we'll have to see how it goes."

Things are about to get even more interesting.

Finn

Here's the permission slip Leo brought home yesterday.

Finn the Therapy Dog.

Leo loves Finn. Finn also "worked" at the school last year and he was, no one is probably shocked to hear, a roaring success. The idea is kids will read more comfortably and be less inhibited if they're around an uncritical, patient, um, creature.

Like Finn.

Some mornings, Leo is not so excited to get on the bus. I think it's mostly for show (anyone who knows Leo can vouch for the fact he has a flair for the drama). What always helps is for him to bring something with him. Leo has been known to bring some pretty odd things on the bus. Pillow Pet, umbrella (on a non-raining day), giant, musical Christmas book. He bounds down the stairs and across the grass, clutching whatever item he's chosen.

This morning, the only thing that would get him on the bus? That picture of Finn, you see up there.

Away They Go

No matter that Leo's bus didn't show up (hey, you can't have everything, right?) and I ended up driving him.

Leo is off to second grade, Ellie is back to pre-k.

Love these little people to death, but right now I am humming "It's the Most Wonderful Time of the Year."

Happy back to school to all!

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.