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.

 

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.

Fragile Kicks and IEP Dillemas

I know everyone has been on the edge of their seats about this one.

Leo’s yellow Crocs were a huge bust.

Not only were they too small (OK, they fit but they’re a tad narrow for Barney Rubble Foot). He just doesn’t seem comfortable in them. And then about ten minutes after he tried them on for the first time, he succeeded in ripping the back strap off of one of them (oh my little Curious George/El Destructo, sigh). Apparently you can order replacements from the company (of course you can! Why am I even surprised?) which I’m in the process of doing, but I’m also considering just reselling the darn things on eBay. Oh well.

Meanwhile Ellie is obsessed with her pink Crocs. It’s all she’ll wear. Well, fifty percent summer shoe success isn’t bad I guess.

In other more “hard” news, Leo’s IEP meeting is next week. Gulp. I guess I should be more nervous than I am. I received a nice call from Leo’s physical therapist last night. I’m pretty sure she thinks I’m crazy because I answered the phone with a very suspicious tone as it was around the time that telemarketers call. Couple this with the fact that hardly anyone but Erin’s work uses our land line, well let’s just say I did not sound overly friendly. But I quickly warmed to her when I realized who it was (oops) and figured out that she called to check on Leo’s tooth (or lack of!) since, as you’ll recall, it was during a P.T. session that he lost a tooth earlier this week.

She also wanted to let me know that she would not be able to attend the IEP meeting, but that she was planning to propose reducing his P.T. sessions to once a week (down from three, one individual and two “group” sessions which is really only two kids).

She said Leo is doing fabulously and has made huge strides this year. He actually met all of his goals for the year back in December (so of course she created new goals). She added she’s noticing him making progress in other areas: last week Leo asked her for a drink of water, as a full sentence (this sentence thing is new and big, trust me). Her response: You can have anything you want if you say it in a sentence!
She pronounced him as doing “everything a typical kindergartner is doing with just a slight delay.”

This is great news of course, but I’m torn about reducing his P.T. On the one hand, it’s wonderful that he’s doing so well. On the other hand, is he doing so well because of all the therapy (three weekly 30-minute sessions)? Who’s to know?

Not a huge, mind blowing question, but one of the many that will swirl around in my head tonight as I lie in bed, having stayed up too late to watch the season finale of "Grey's Anatomy."