The Rough Stuff

Last week was a rough week. I’m generally a positive, upbeat person—I spend easily 95 percent of my time feeling happy or at least content. But last week…last week brought me to my knees, figuratively if not literally.

Last week, I had not one but two instances of people at his school underestimating Sam. Neither was done in any sort of malice—quite the opposite, really. But in both cases, I was forced to acknowledge that not everyone sees my sweet boy as the very capable child that I do. I had to smile politely while realizing that the person right in front of me thought my child was incapable of simple things.

I guess I didn’t have to smile politely, really…but I did, because that’s what I do. I’m a nonconfrontational sort by nature, and I try not to alienate people who probably mean well by jumping on them for something that I know wasn’t done with any negative intention. Before I had Sam, after all, I probably would’ve said some of the very same things, not realizing for a second how it might make his tender mama feel.

And that was okay…a little bump in my path, a little stumble in my positive gait. But nothing too bad. But then there was this story from a Tampa news station.

All at once, I wanted to scream. Maybe mostly because this is far from the first time I’ve seen things like this. Sometimes they’re a little questionable—sometimes no one really saw what happened, so it’s hard to tell what’s absolutely true. But in this case, the abuse of a student with special needs was witnessed and reported by other teachers, who I’m going to assume are likely credible sources…and yet still, at first nothing was done.

Why? Because the student is nonverbal. She can’t tell what happened to her, so it can be swept under the rug. It won’t be now that it’s hit the news, of course…but it could’ve been. It might’ve been. It has been before, in other cases.

My son is largely nonverbal. This could’ve been him. Because it happens close to home, too. In fact, a similar situation happened recently a school district incredibly near to ours. One town over, more or less, and my sons would be in that district. Yikes.

And there was this one, too—different school district, but again close to ours.

It’s a big problem—students with special needs being abused. The ACLU did a report on it in 2009. And the ARC has a page devoted to it.

I could go on and on, but I don’t need to. It’s a problem, and it scares the heck out of me. Some days Sam doesn’t want to go to preschool, and how do I know why? Is it just him being a fickle four-year-old who sometimes loves school and sometimes doesn’t feel like going? Or does he have a reason for not wanting to? I have no way to know, because he can’t tell me.

I worried about this with Theo when he was simply too young to really be able to put things into words, but not nearly as much as I worry with Sam, who can string together two words to say “Mama read!” but certainly couldn’t tell me if someone was hurting him.

And so I send him to school, where he learns a lot and plays with friends…and hopefully isn’t getting harmed in any way. And I just hope with all my heart that he’s not.

So I was upset to see the story out of Florida about the little girl who was pulled by her hair by a teacher, but even that seemed somewhat small potatoes compared to what led me to cry myself to sleep last week. Another loss in the Down syndrome community, but this one so unexpected. So horribly, horribly unexpected.

Every year, we have kids in the community who don’t make it, and it takes a little piece out of my heart every time. I ache for their parents, and I ache for the loss of their beautiful spirit on earth. But most of the time, these kids were medically fragile to begin with. And that doesn’t make it okay or in any way better or any less tragic—it just makes it more expected. With the medically fragile kids, the ones who’ve survived setback after setback and surgery after surgery, it’s sort of always in the back of my mind that their time here may be cut short.

But Nicholas Love? As far as I know, he was a very healthy little boy. He was just one month younger than Sam, and I knew of him because his mum contributed to a book about Down syndrome diagnosis that I also contributed to. And I believe I have in the past shared his picture on my Facebook page, during Down Syndrome Awareness month.

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A healthy, happy, beloved, cherished little boy with a beautiful smile and incredible eyes, who graced the cover of a magazine in his native Australia. Gone. Just gone. From some sort of strep infection, as far as I can tell from his mum’s Facebook updates in the weeks before his death. He had just started school, was doing well, caught a strep infection…and now he’s gone. Not forgotten by anyone, but gone.

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It has taken me almost two weeks to even write this. I cried myself to sleep the night I learned he had died. I couldn’t stop thinking about his mother and father…about his two older brothers, one of whom is currently in treatment for leukemia…the loss that is shattering their family.

I went back and read his mum’s diagnosis story in the book we both contributed to, and in it she referred to first meeting her “perfectly healthy third son” when he was born, and at seventeen months she speaks of him being “really healthy from birth.”

No complications. No reason why this little boy would die from an infection that nearly every kid gets at some point. No reason other than that sometimes Down syndrome doesn’t act like one would expect when medical issues come up.

And there you have my biggest fear with Sam. Like Nicholas, he has been extremely healthy. Our only real concern has been when he got severely dehydrated from a stomach virus a few months ago. In fact, Sam had strep himself last fall. It took a little longer to clear than I had expected—he didn’t bounce back quite as quickly as most kids do. But he bounced back, and that was that.

But what if he hadn’t? What if someday he doesn’t? What if someday he is taken from us because Down syndrome didn’t play nice with whatever was happening with his immune system, and there’s not a damn thing I can do about it?

My biggest fear. Hands down. Ask me if I care that my son will need lifelong supports in some way or another. Ask me if I care that he may or may not live independently someday. Ask me if I care that for his entire life, some people will look at him differently and he will be judged by his diagnosis. I don’t care about any of this. What I do care about is him staying here, with us. I could not survive losing him, as sweet Nicholas’s family lost their precious boy. And yet I’d have to, because Sam isn’t the only person counting on me. But it would kill me inside.

Anyway. Now you know why I freak out and fear the worst when Sam gets a fever. Wouldn’t you?

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