Tuesday, July 29, 2014

Well, shoot! Did I give my kid a weird name?

Before I begin let me be clear: my son's name is Simeon. It's pronounced "sim-E-un."  

And I really like my kid's name.

I swear we put a lot of thought into it. I said it over and over again in my head. I doodled it. I checked the initials multiple times (because I'm sure there is someone in the world named Aaron Steven Smith and his parents have to live with that shame forever). We gave Sim a name that has meaning, a name that stands for patience and receiving and faith. But every once in a while something happens and Greg and I will glace at each other, wide-eyed, and I know we're thinking the exact same thing:

Well shoot, did we give our kid a weird name?

Like when the teacher's aid at Sim's school leaned over to Greg and complimented our name choice saying, "I've always LOVED weird names!"

Or the nurse at the doctor's office who told me that my kid's name was "impossible" to pronounce and so she would be calling him "Cinnamon" from now on. And then she did. For the next eight months. People probably thought I had an orange tabby cat in my baby carrier.

Or the countless people who learn my son's name and immediately ask, "Oh-- so like, does that mean something?" Like maybe "Simeon" is the Swahili word for "boy-in-wheelchair" or "four-eyes" or "child-with-hair-of-duck."

Then there are gems like the voicemail we got this week. Provided below for your listening pleasure (name and organization of the caller have been bleeped to protect the innocent):

I seem to have misplaced my daughter. Face. Palm.

In his young life, Simeon has endured being called, Simone, SEA-moan Simon, Sim-e-ON, Cinnamon, and (hang on to your hats) Semen <--- unfortunately, I am not kidding about that last one. Most people just call him "Simon" and get on with it, which is really so darn close, they should probably get a medal for playing it safe and selecting the least inflammatory option.

I comfort myself with the fact that "Simeon" is a relatively common name in Orthodox Christian circles and most Catholics have heard it too. I seriously had no idea that the rest of America would be completely bumfuzzled by our choice. Also, the name is in the Bible (<-- no biggie) so obviously God must like it okay and that's got to count for something (although "Nergal-Sharezer" is a biblical name too, so God has interesting taste). 

I mean, come on you guys! It's not like I made the name up myself. It's not like I added punctuation marks willy-nilly ($im'eon looks kind of cool, though...). It's not like it's that hard. 

Is it?

I don't even know anymore. 

Dear Simeon,

Look, Dude. I'm sorry. I think we may have (accidentally) given you a weird name. But it has meaning, and we love it, and it's all yours. So own it. Go out there and get down with your weird self.

(whose real name is "Mary Smith" which sounds like an alias so I guess there are worse things than weird)

Now you have to make me feel better. Anyone else have a kid whose name is mispronounced on the regular? Anyone else LOVE their child's name even though you know it's a bit... different? What about YOUR name? Love? Hate? 
(Can you tell I'm wrestling with the baby name question for Smith Nugget #2?)

Friday, July 25, 2014

The troubling side of wheelchair perks and special treatment

We decided to pick up Italian last night. This pregnancy has turned me into quite the lackadaisical chef and so, on nights when I stand too long-- staring into the cupboards with glassy eyes, an unbecoming sneer on my face-- Greg suggests we find sustenance elsewhere.

The place was fast and casual. Order up front, pick-up at the counter. I chatted with the check-out gal who oohed and aahed at Simeon as he wheeled through the line, waving to the girls working the pasta station and bumping (not too gently) into the back of my legs. I offered her a gift card, apologizing because I wasn't sure how much it was worth. She leaned in with an understanding look and said, "Don't be sorry-- you have enough to worry about." Then gesturing towards Sim she asked, "Does he like cannoli? I think he needs some of our cannoli bites!" And with a wink she grabbed a bag of crumbled cannoli shells, dusted them with sugar, and tossed them into our bag.

Wheelchair perks.  Kids like mine get them all the time.

Like the a giant sugar cookie, passed to him surreptitiously, by the guy working the meat slicer at our local grocery store. "Shh...don't tell" he had whispered.

Or the Lego set given to our friend's daughter (also a wheelchair user) at the toy store.

Or the meals paid for by strangers when families like ours are out to dinner.

Sometimes wheelchair perks trickle down to mommies too (if the toddler isn't looking)...

It doesn't happen every day and it's certainly well-meant, but there's been something about these handouts, these unsolicited gifts, that's always made me a bit uncomfortable. There was something about wheelchair perks that worried me, I just couldn't put my finger on why.

Until I talked to a friend of mine.

She has three children and her oldest, now a teenager, has spina bifida. Her daughter uses a chair just like my son. We were chuckling about the perks, the sweets and the the special treatment, when her voice dropped, "It can be hard though-- especially when you have other kids..."

Then she told me through tears about her family's trip, years ago, to Disney World. How Mickey Mouse, with his over-sized head and bright red pants, had walked past mobs of patiently waiting kids, making a beeline for her daughter.  How he knelt beside her wheelchair as everyone smiled and snapped photos. How onlookers watched with knowing expressions because this was as it should be-- this little girl probably needed the time with Mickey more than anyone.

All while her two younger children stood on the sidelines and watched.

And yes, my friend tried to push her other children forward and yes, they eventually met Mickey too and yes, they got a lovely family photo, but there's no way around it-- sometimes special treatment is troubling.

Troubling because our children are not more deserving, simply because they experience disability.

Troubling because our child's typical siblings are often ignored by well-meaning adults. Adults who don't realize that special treatment sends a message of otherness that can be just as alienating as ignorance.

Troubling because sometimes it is a reminder. On days when we have forgotten that our children are different, the free cookies tell us that the world remembers.

Troubling because deep down, we know it won't last forever. The world will not bend over backwards to make a man in a wheelchair feel "special," nor should it. So when will the perks stop? And how will my son feel when they do? Forgotten? Isolated? Outgrown?

I don't know what the answer is. I'm not sure I even know the question. But I do know that the pendulum has swung and, while I am thankful that in today's world kids like mine are acknowledged and valued rather than disregarded and ignored, I still hope that someday my little boy, and others like him, will be expected to pay for their cookies.

And wait patiently for their turn with Mickey Mouse.

Just like they have to wait their turn at home.

Just like their brothers and sisters.

((Siblings of children with special needs are affected by both the negative attention (stares, rude comments) and the positive attention (freebies, perks, kindnesses) give to their brother or sister who has a disability.  I thought THIS ARTICLE was helpful if you want more information. Also this TED talk. And this))

So what do you think? Is there a dark side to the special treatment, praise, and "perks" that kids with disabilities receive?  How can we help our children and their siblings to navigate the positive attention as well as the negative?

Tuesday, July 22, 2014

Brain jokes are funny (and what to do when life hands you bald spots)

Last week my kid had a shunt revision.

By which I mean he had brain surgery.

Brain surgery isn't funny. I swear, it's not.

But, since humor is my favorite coping mechanism, I have to work really hard not to make inappropriate jokes during these nail-biting surgeries. Yes, a little brain-humor might make me feel better, but I'm pretty sure it makes everyone around me feel super creeped out.

Jokes I have to NOT make when my son has brain surgery:
  1. Zombie jokes (FYI: surgeon's don't take kindly to the implication that they're going in there for a "little snack.")
  2. Lobotomy jokes (asking the doctor if he can take out the "parts that cause toddler tantrums" doesn't get nearly as many laughs as it should, in my opinion)
  3. Jokes where you just say "Brains!!" a lot. (Like "Careful with his brains on this one, doc!" or, if I'm really getting anxious, "Gosh I hope his brains aren't all messed up after this.")
Thankfully, Greg is quite the brain-joke connoisseur so, at least when it comes to grey matter, he doesn't mind if I add a little color.

But there's one part of this whole thing that I will not-- will NEVER-- find funny.

The dreaded surgical head shave.

I know it sounds shallow, but I firmly believe that any spina bifida mother (whose child has a shunt) or any parent whose child has experienced surgery of the noggin variety, will be totally with me on this. Not only do our kids have to endure the pain, discomfort, and generally ickiness of having their noodles scrambled (<-- that's gross, I'm sorry), they also have to walk around town for weeks with a patchy bald spot like a mangy stray dog. The thing is, our kids get a lot of attention already. Fitting in is something we work hard for. So when you have a crazy hack job for a hair cut, it's just a little... discouraging.

Needless to say, my last words to the surgeon weren't "Do what you have to do!" but were instead "Don't go crazy with the clippers, okay doc?" 

He didn't listen. Simeon came out looking like that infamous sleazebag, Roger Klotz.

If you didn't watch Nickelodeon in the 90s then you were seriously missing out. Patty Mayonnaise was the coolest.

A few folks suggested we turn this mess into a mohawk but I'm kind of a square and, like my father before me, I still see a mohawk as a sure sign of adolescent delinquency (my little baby would look like a naughty kid!). Thankfully, my BFF and a fellow SB mama gave me some advice on Instagram: this can be fixed-- follow in the footsteps of Macklemore and Miley... give the kid an undercut.

Brainiacs! (<--haha) So, three days post-op, I took Simeon to see Jillian (<--- rhyming names = match made in salon heaven). Jillian takes care of my giant mop of hair so I figured she was up for the challenge of fixing Sim's hairy situation. The kid was a real sport and took his haircut very seriously with minimal fussing and fidgeting. Jillian let him stay in his wheelchair for the big event, which meant she did the entire process while down on her knees (because she's basically an acrobat). 

And now for the big reveal...
That BEFORE photo is killing me. The kid has so much hair! He's like a fluffy little duckling. You can still see the shaved area in the AFTER photo but it definitely blends in better and will grow out soon enough.

So there you have it. The undercut is my recommendation for little boys post-shunt-revision (assuming their shunt is in the back). If you have a little girl then... I don't know. But I'm sure, if we put our heads together, we could figure something out.

And now, I'll leave you with some terrible brain jokes (that I found online because I'm not a freakin' comedian).

What kind of fish performs brain surgery?
(a neurosturgeon)
What is a sleeping brain's favorite band?
What happens when you break the brain scanner?
(you have a CATastrophe) 

You're welcome.

What do you think of the new do?
Got any good brain jokes to share?


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