Summer Update: On Endings and Beginnings and Tissues

Our first big "official" summer outing was trip to the strawberry patch. Yes it was raining, and yes it was about 55 degrees (no joke) but I'm proud to report it was the first activity like this that didn't feel like a complete disaster, with toddlers running in one direction and big kids frustrated because we couldn't do "everything." It just felt like, KIDS. Four of them. And it was fun! Imagine that. 

We are over halfway through summer (I think?). 

July 4 has always felt like the halfway mark to me.

Anyway.

I'm behind. As per usual.

Leo graduated. From fifth grade. Just like that, elementary school, DONE.

This was his reaction:


And this was mine.


It didn't hurt of course, that they concluded the "ceremony" with the entire graduating class singing "We Are the World." My baby! Off to big, bad (I hope not!) middle school. Endings are hard. Goodbyes are harder. Leo's elementary school has always felt safe and nurturing and well, familiar (it hasn't always felt familiar of course, but the beginning, when it was scary and new feels like a billion years ago). Now we know almost everyone and even though it bugs me a little, Leo is known as the "unofficial mayor" (Hello, cliche!) of the school (you know what? Cliche and all, it comes from a good place and you can't really argue with that). 

On the last day of school, a much beloved teacher Leo had from kindergarten through second grade sent home a small photo album with a collection of pictures of his years with her, along with a heartfelt card. There was five year old Leo at the pumpkin patch (sob!), there was seven year old Leo making (pudding?) and wearing a Halloween costume (Aww). Not only was it sweet to see pictures of him I'd never seen, it was such a gift to see him "in action" at school, which is this somewhat mysterious other life our children have, largely without us.




Yup, I cried.

I remember when Leo was born (and I ordered basically every book related to Down syndrome from Amazon) reading something about how when you have a child with special needs, you will have an even larger "village" than you would have with a typical child, and you will often connect to these people more deeply. The reasons are many: There are extra challenges and extra struggles of course. There's much more information that needs to be disseminated. Your child's frustrations are theirs, but so are their victories. Also, there is usually much more communication between teacher and parent (in Leo's first year of elementary school there was a daily journal home and many, many emails). You can't help but grow close to these educators that are in the trenches along with you. And so some of them, the really good ones, find a small corner of your heart, where I think Mrs. L. and Mrs. F. (the third grade teacher who told me that I was a "forever friend") will always remain.


Back in May I met with Leo's future teachers at the middle school. We had an informal meeting (not an IEP).  Can I pause to say that just once, I'd like to get through a meeting with Leo's school "team" without being a sloppy, teary mess? Bad news, good news--doesn't matter. When it comes to talking about my boy? Tears. This particular meeting was emotional for a variety of reasons. I'm still not completely sold on his placement, but I don't know that many people who have middle-school-aged children with Down syndrome who are. I'm trying to be positive and open minded. I really am. 

Thankfully, Leo couldn't disagree more.

A few weeks later Leo and I toured his middle school together. Leo arm wrestled the principal twice and succeeded in not hugging anyone (though you could tell he REALLY wanted to--there had been a stern conversation about hugging prior to the tour). He was disappointed when the visit came to a close and kept trying to extend it (yes, he met the cafeteria ladies, several guidance counselors and found the comic book section of the library where he would have happily remained for the rest of the morning). 

Pass the tissues, middle school here we come.

The Village: It Never Gets Old

Leo, on a recent stint as a pastry chef. The "Village" helped him do that too.

Something wonderful happened over winter break. While dashing out for a quick (solo!) errand that included a stop for coffee, I ran into Leo's teacher from last year. She wanted to know how he was doing.

The funny thing was, I'd been thinking about this teacher (whom we all loved). When we were going back and forth about Leo's placement late last year, I'd even thought about getting in touch with her, but wasn't sure if that was "kosher." Mainly, I'd wanted to ask her why he could do so well in one class (hers, third grade) and struggle so much in another, just a year later (fourth grade).

I was going to call you, I told her. But I didn't. I didn't know if it would be weird.

That's when she playfully chided me for not getting in touch, kissed me on the cheek, hugged me, and told me that next time, I should call her. Call her ANY time. Because she was a "Forever Friend." 

I'd be lying if I said I didn't have tears in my eyes as I walked back to my car with my hazelnut coffee.

The Village. The people we've met over the years who have helped us, helped Leo. From his very first speech therapist, who brushed his little toothless, eight week old gums in our Park Slope, Brooklyn apartment, to our infinitely patient family dentist, who worked with Leo for three years, to get him to sit for an actual cleaning at the age of seven, who thought nothing of practically doing a headstand in order to pull a little rotten tooth. (This is the same dentist, you'll recall, who, when I saw him weeks later at a Halloween parade, called to me from across the street, "How's Leo?!")

My Rolodex of support is bulging, from doctors and specialists who know just how to talk to and treat Leo, to friends who "get it," to teachers who want me to call them a Forever Friend. It makes my heart burst with joy and gratefulness.

What a contrast, I sometimes think, from the way I felt when Leo was first born, to the way I feel now.

It struck me too, as I took one last look at the wall of holiday cards before we took them down, last weekend. So many cards from people who I would never know, if not for an extra chromosome. Preschool friends, blog friends (some of whom I've never even met!). So. Much. Love. In our life, because of something that "went wrong."

And for the ten-thousandth time, I am reminded of what it feels like when you realize something you thought was a curse is really just a giant blessing.

The Black Eye and the Bus

Our babysitter called me at work on Friday afternoon (and yes, I panic EVERY time I see my home number light up on my office phone). Leo came off the bus crying and very upset and yes, what every mom just loves to hear: bleeding.

His bus aid explained that Leo had hit the side of his head on the bus.

Huh?

Exhibit A (taken the day after the incident). It actually looked even worse on day three.

My first question (I had a lot) was, how fast was that little bus going? Was he strapped in? Tightly? Of course this happened on a Friday afternoon so there was no one for me to call. All I could do was watch Leo's face grow more purple as the weekend progressed. Monday morning, you can be sure I emailed Leo's (wonderful and very conscientious) teacher to give her some background on the shiner. I knew Leo would give her an earful but I wanted to make sure she was clear on how it supposedly happened.

She returned my email immediately, told me she took a picture of Leo's eye and marched him to the principal's office to show her. Several emails were fired off to the superintendent and the transportation and special education department. (I had already emailed them all). They weren't messing around and I loved it.

Well. I was pleasantly surprised to hear from the director of special education almost immediately. Evidently they take black eyes from school buses pretty seriously. And by early afternoon I received the following email from her:

I contacted [the director of Transportation] when I received your email. She immediately reviewed the bus video from Friday afternoon and sent a copy to me. [The superintendent] and I carefully reviewed it as well. It showed Leo sleeping soundly on the bus, with his seat belt on. However, as Leo slept, his head moved back and forth which caused him to involuntarily bump it on the side of the bus. The bus monitor immediately rose and attended to Leo. Also, it did not appear that the bus was traveling above the speed limit.

Side note: My baby falls asleep on the bus! Poor guy.

I was pretty surprised to learn that school buses have video cameras. I didn't know this was standard though I guess I should, after watching enough episodes of "20/20" (who didn't see that grandma getting beat up, repeatedly, a few years ago?). I was relieved to find out about the cameras. Leo can definitely verbalize a lot more than he used to and there is no doubt in my mind that if someone hurt him or if something wasn't right, he would tell us. But still, sending your kid out in the world, any kid, let alone a kid who is difficult to understand and perhaps, a little extra trusting, well, it's a scary proposition. So I was mostly at peace with the original email, but I'd by lying if I said I was completely satisfied with the explanation. You can imagine my relief when I got this note, from Leo's (amazing) teacher:

[The principal]  let me see the bus video (since I am such a skeptic lol). I am happy to say that it is true! Leo was asleep his head rolled to the left hit the window (no speed bump, no speeding) and I am really pleased at the bus aides reaction. She jumped right up and comforted Leo!! All is GOOD! Have a GREAT day!

Aside from Leo's eye (which looks so much better, already), all is good. And I am further heartened to learn that Leo's teacher isn't afraid to ask a few extra questions. It takes a village for sure, and if a few of those village members are skeptics to boot? All the better.