Membership Has its Privileges

Occasionally I’ll read a tweet or overhear a “typical” parent discussing a legitimate and “normal” worry or complaint. ( I hate both terms typical and normal since we’re all just parents and what in any of our lives is actually “normal” or “typical” but you catch my meaning more efficiently by using them so that’s what I’ll go with here) A worry or complaint that Karin and I have never had to worry about with Liam. It always gets me thinking of all the bright sides, all the silver linings in the clouds of special needs parenting.

At first I thought about how we never have to wait when we end up in the E.R. (it’s amazing how bringing in a kid hooked up to a ventilator can bump you to the front of the line) or the fact that the pulmonologist, neurologist, and pediatrician will write us a script based solely on a phone call since they know us so well we don’t have to come in to be seen first. But while both of those could in a weird way be considered benefits, what other parent would ever be jealous of things like that? Having the top pediatric surgeons in the state know you on sight isn’t all it’s cracked up to be.

No, instead I’m talking about benefits that will help me feel better when I hear other parents talking about “date nights” knowing that they probably don’t have to involve nursing agencies and insurance companies to get a babysitter. Benefits to think about and comfort my own jealousy over parents who get to sleep in the same bed together more than one or two nights a week.

So I  thought about all the good parts. All of the concerns I’ve heard mentioned that my family doesn’t have to give a second thought to (yet.)

The privileges. These are not worries that I am making fun of at all. Parents absolutely should be worrying about these things. Lucky for us, Karin and I just don’t need to.

1. Baby-proofing — This is the one I heard mention of today that got me thinking about this post in the first place. Liam was born so early we hadn’t even thought of baby-proofing our house yet. By the time we got home from the NICU we had a pretty good idea that we wouldn’t need to. Liam can’t crawl, he can’t grab, hell thanks to the trach he can’t even swallow and so the electrical outlets in my walls are free of little plastic covers to lose or be stepped on. My kitchen and bathroom cabinets, even the ones on the floor, open with a quick flick of the wrist. I can even keep the scotch right out on the counter. (just kidding, I keep that on top of the fridge where Karin can’t reach it. That whiskey is mine!)

2. Story Time. —  Look I love children’s books. The more of them I read the more I find new ones that are so clever or funny and who doesn’t love revisiting the classics of our own childhood’s but I’m willing to bet that I made my parents read Grover’s “Monster at the End of This Book” a million times.  Over, and over, and over again, the poor things. During the daytime and at school Liam hears his fair share of kids books and stories but at bedtime when I get to read him to sleep I get to read my own stuff. It’s all about tone of voice anyway so instead of more Seuss and Silverstein, Liam and I read aloud Vonnegut, and Gaiman, Cherie Priest, and Adam Christopher, Terry Pratchett and Harlan Ellison. And everything else that I find at the library. Liam is very well read for a three-year old.

3. Potty Mouth — I swear a lot. I always have and I always find it funny when we all censor ourselves and politely substitute benign words or start spelling things around our kids. My parents swore around me growing up but I definitely knew there were a bunch of words out there that I wasn’t allowed to say until I grew up. Let’s face it if or when Liam utters his first word if it happens to be shit or another of the four letter variety (it’s not an unheard of occurrence in my family) I would laugh and cry and celebrate that wonderful curse for the rest of my days.

4. The Back of the Milk Carton — I don’t mean to be insensitive about something so serious but kidnapping or abduction? It’s not really a concern of ours. Hard to steal a child securely attached to a 40 pound ventilator and 50 pound wheelchair.

5. So You Want to Go See a Show? — Sure Karin and I don’t get out for a date night very often but I’ll tell you where else we don’t end up. “Disney on Ice”, “Dora the Explorer Live!”, “The Spongebob Squarepants Live Screech-a-Long” or “Raffi’s Two Hour Children Screaming Extravaganza”. I’m sure that every kid in every one of those audiences is having a wonderful time waving their light-up novelty toys and yelling their adorable little heads off. Not so sure about the adults in those same rooms though. Luckily Liam’s not a very big fan of crowds or loud noises. So when he gets just a little older and bigger I’m sure we’ll take him to one of these shows just to say we have but I’ll bet you dollars to doughnuts that he shuts down and sleeps through the entire performance.

6. Open Up the Hanger Here Comes the Airplane — The tricks other parents must have to resort to in order to get a three-year old to choke down enough carrots and peas without spitting it all over themselves or their high chairs is beyond me. Instead I put exactly the amount of formula for the calories that Liam needs in a bag and set the rate on his feeding pump. Boom! consistent nutrition and growth at the press of a button. Can’t beat that with a rubber ended spoon of Gerber Beef and Gravy.

Well there’s a quick list of six and while there may be more I think I’ll end it there before I have all of my “typical” parent readers running out looking for their very own special needs child.  I don’t want to start having to worry about number 4 on the list anytime soon.


  1. I prefer the word ‘normal’ over ‘typical’, even though the PC choice of the day is not ‘normal’. That is only because C-3PO uses ‘typical’ as an insult in The Empire Strikes Back’, and not ‘normal’.

    CONTEXT people….CONTEXT!!!

    Interesting post. You’ve got the sense of humor that you need down pat. 😉

  2. My autistic daughter who is 8 watches the same toddler shows over and over till my head just about explodes!! I’d love to buy Dora a GPS and shove it down her throat so she has no more reasons to being lost and singing stupid songs!! As for her cousin Diago, I think there’s some funny family shit going on there!

    Ps It’s only the different continents that save Liam from the milk carton pic lol ( joking of course, I just love that cheeky face )

  3. Okay, I could echo each and everyone of these. The ventilator no, but i can substitute the wheelchair and walker perhaps. And the potty mouth, one of my favorite benefits if you must know. Also, I can listen to certain radio programs in the car that are so not a go with the other kids.

    You know I am am grandmother, don’t you? Well, I can’t tell you the number of times my daughter and son-in -law are chasing around their 2 1/2 year old or fielding a full on fit and I will tel them, a disabled child does have it’s perks.

    G-tube. Gotta love those. I have been able to turn around in the front seat on a road trip and pump 6 ounces in,in under a minute. Easy peasy.

    The ‘club’ does have it’s benefits and it is always nice to acknowledge why. Strange to some but ‘normal’ for us.

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