Adiba Nelson

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Welcome Letter To New Parents Of Kids With Special Needs

Hey there, new member! Welcome to PUNK’D - The Parental Units of Nice Kids with Disabilities club!

Yes, I’m talking to you - parent who just found out your child has “xyz” disorder/disease/disability. And you, parent who was just greeted by the words “you’re child has a traumatic brain injury.” And yes you, adoptive parent, who kinda knew what you were getting into, but still feel a little shell shocked. Pull up a chair and get cozy - you’re going to be here a while. And by “a while”, I mean the rest of your life.

May I get you anything? A glass of wine? A shot of tequila? A soft, cool pillow to put over your face?

I KID! I KID!

But seriously, if you don’t already have a sense of humor, you better head on over to Amazon and see if you can buy one on Prime because you won’t survive this without it. How do I know? Well, I’ve been a member of the Parental Units of Nice Kids With Disabilities club (or PUNK’D) for eight years now.

Again, I KID. Seriously, ya gotta keep up.

But, you do kind of feel like you’ve been punk’d when you first get the diagnosis, don’t you? Like you’ve been telling every doctor within a 50 mile radius (and anyone at the grocery store who would listen) that you just know there’s something not quite right with little Suzy, and then Dr. #8945397 comes in and confirms that sneaking suspicion you’ve had for the last year. You kind of stare at him blankly for a second, not saying a word, and then you look around the room, partly searching for the hidden camera, partly searching for Ashton Kutcher, and partly trying not to make eye contact with anyone because if you do, the dam will burst and your tears will flood the room, tragically killing you and everyone in it.

Am I right? Don’t answer that. I know I’m right. It’s kind of what we do. Consider it your “pinning”, of sorts. You are now an official member. With your membership comes a litany of prizes and surprises and hospital gowns that should (but don’t) come in various sizes. Some prizes - depending on the diagnosis, may get you great parking anywhere you go. Trust me, if you live anywhere in the south (east or west), you will be so grateful for this come summertime. Nothing says sexy quite like underwear sweat, but now that you can park that much closer to your destination, you can load in or out and still be cute! Also, the free education. Not even kidding. The things you will learn about food, the brain, the body, the musculoskeletal system, the gastrointestinal system, the technology needed for effective expressive and receptive communication, how neurotransmitters work and the medications that can and cannot affect their firing patterns - oh honey I could go on and on, but let me just put it like this - if you had to pay for a college education that covered all of the things you’re about to learn, ya couldn’t. It would simply be impossible. No amount of money could equate to the vast amounts of knowledge you are about to acquire FOR FREE. You will learn so much that you’ll be able to diagnose other people’s kids just by hearing them sneeze. Ok. That might be a stretch. But believe me when I tell you that there will be times that you will know the same, if not more than the doctors treating your kid.

My favorite prize...the one that makes my mascara run every single time...the support. PUNK’D comes with so much built-in support it’s ridiculous. People from other states, people from other countries, people who don’t speak your home language, but do speak your heart language - parental love. The support will come when you least expect it sometimes, and when you most need it other times. It will come in the form of an email, a food box, toys for your children, a Starbucks with a smiley face in it, a pillow to scream into, a hand squeeze, a back rub, A NAP, a babysitter who understands the importance of “me time” or “date night”, a knowing glance, a belly laugh, a Kleenex for your tears, and a seat next to you as you sit in silence. This is truly my favorite part of PUNK’D. It’s like the sorority sister who holds your hair back after an epic keg stand results in mass puking. There is no judgment, no pointing and laughing, just support so we don’t go crashing face first into the muck. They brush our hair back, take care of us, and love us - even when we’re at our absolute worst. This is the club you’ve joined.

Now, we know you didn’t ask to join this club, and to be quite honest, we didn’t pick you either. But here we are. Members of the same club at the same time, dealing with different, yet oddly similar issues. Will our kids be ok? Will they live a full life? Will they make friends? Are people going to be nice to them? Will they get married? Who will take care of them when we’re gone? What the hell is the difference between an IEP an MET and a 504 plan? I get IDEA but is it the same freakin’ thing as FERPA? Do we qualify for ESSA funds? And the ever pressing question of the day: how is Trumpcare going to affect my kid?

So yes, here we are. You the newbie, me eight years in, and still others 24 years (and more) in. We’ve got a long road ahead of us, you and me, but one thing I can promise you about PUNK’D - we promise to hold your hand. We promise to scream just as loud on the roller coaster, and we promise to crack a hell of a lot of jokes along the way because you’re going to need it.

Welcome to the club, kid. We got your back.