The real story

I am totally obsessed with the library. Don’t get me wrong, I love technology. Mostly. But books are my crack.

On my night stand right now is Sense and Sensibility (I am into classics for the summer); Breaking Dawn from the Twilight series (Team Edward all the way, baby); one of the Laura Ingalls Wilder’s original nine stories (yes, I got that from the young reader section, what’s your point?); and the final Harry Potter, quite possibly the best book I’ve ever read. Did I mention I have already read all of these books (um, multiple times)? I love new books, but an old favorite is bliss.

That said, I never get to just hang out at the library. You know, enjoy the smell. Because books smell awesome. Anyway, today I just had Avery with me, so I got to browse. And I found an entire section with books dedicated to parenting special needs/medically fragile children. How had I not seen this before?

So I sat down criss-cross-applesauce style on the floor and eagerly started poring over them. What gem might I find in all of these? But I was soon disappointed. I didn’t check out a single one. Even skimming them, I couldn’t relate to much of what I was reading.

So here a few of my own gems for parents of exceptional children (I totally love that word, by the way). Five lessons learned that I thought I would share:

Different keeps things interesting. Most kids with an autism spectrum disorder have some sort of sensory dysfunction. But what this really means is things like wet clothing will send them over the edge. Because it feels weird. And that means that you may be taking a shower, like I was this morning, and find that your autistic child accidentally spilled his apple juice all over his clothes. And then you might come downstairs to find him, like I did this morning, sitting naked, except for his Crocs, at the table, drawing a camel. With his clothes on the front porch.

A spoonful of sugar doesn’t compare to a good chaser. Books also don’t say much about disguising the taste of yucky stuff like liquid seizure medication or oral chemo. But if you think back to college, you already know the answer. Get a chaser. Root beer or a milkshake are solid choices. And pudding disguises most meds in pill form, but the best thing to do is to teach your child to swallow them whole. Grant learned at four, but I’ve known lots of two-year-olds that could do it. The secret to success: practice with M&Ms.

Sticks and stones are so much easier than words. Books don’t prepare you for the words that are going to hurt. Sticks and stones are a million times better than “moderately mentally retarded,” “delayed,” or our latest, “borderline functional intelligence.” I mean, what does that shit even mean? How could those words apply to my beautiful child that draws like a 10-year-old Picasso? Hearing them is pain that takes your breath away. But give it a minute. I promise you’ll breathe again. Because sometimes you also get to hear words like “remarkable improvement,” and the best one ever, “remission.”

Lean on Your Peeps. Speaking of these horrible words, sometimes you may find yourself really pissed at the people that use them when talking about your child. But I promise you, they don’t like them any better than you do. You will be hard pressed to find a special ed teacher or pediatric therapist that doesn’t consider their job a calling. God knows that whatever insane amount of money a pediatric oncologist makes, it isn’t nearly enough. Not even in the hemisphere of enough. So let these folks have your back. Realize they love your kid just like you do. Because, hello, how could they not?

Realize a New Normal: Books won’t prepare you for that day when you’re at a wedding, and you realize that your oldest child, your first baby, won’t ever get married. Or have his own family. And then you’ll cry. Not because the wedding is beautiful. But because life is sometimes ridiculously, tragically, unbelievably unfair.

But out of the blue this happens: You realize that the normal you never thought you would have is really okay. In fact, it’s more than okay. All the hard and horrible makes the good and joyful even more so. And that changes you for the better. So when you’re cleaning under the couch like I was this morning, and find a melted green popsicle, you won’t be as quick to yell. Because you will have the hard-won understanding that it is, after all, just a fucking popsicle.

And you will look at that stinking cute kid of yours, and you will be completely, 100 percent okay. Because, hello, how could you not?

(On a serious note, I have read some wonderful books over the years about autism, and several really good books on childhood cancer. I would be happy to recommend a few.)