I’m Mostly Kidding

Well, it’s definitely fall here in the South and that means lots of get-together, parties, and tailgating. It’s a fun time of year.

Last year we felt Charlie was really too small to enjoy any of it. We mostly got him babysitters for outdoor events or anything involving a lot of people. This year, however, we think that Charlie is old enough to enjoy some of these things. He likes being pushed in the stroller and he loves to listen to his iPod, so I can take him just about anywhere.

Of course, then the anxiety starts to creep in. Charlie, in a stroller, listening to music, looks mostly normal. He has some strange eye movement from time to time, but as far as I can tell, his general appearance doesn’t send up red flags.

So I’m imagining there will be some uncomfortable-ness as we run into acquaintances. Our friends know that Charlie has issues, some are more up-to-date than others, but I’m fine talking to them knowing that if they ask how Charlie is doing I can say that we’re working on standing or saying the word “cup” and I won’t have to backtrack completely and tell his birth story again. Not that it isn’t a great story, but Hubby and I equate telling someone your kid is disabled with throwing a bomb at them. Their faces fall, they don’t know what to say, and suddenly, you’ve ruined their day. Granted, you’re the one with the disabled kid and you’re actually fine with it, but now they’re completely bummed out. It feels like a party foul. Dropping the disability bomb on someone is never cool and imagining a group outing where I may have to do it multiple times doesn’t sound as good as an offer for a teeth cleaning. Or a mammogram.

There are a couple approaches to this. I could go with the “it’s none of their business” approach. I mean, because it isn’t. But these aren’t strangers–these are people we know. Hubby and I were in a lot of student organizations in college and as a result, we know a lot people. Not best friends, but people we like and enjoy talking to. These people are often at football games or the birthday parties of mutual friend’s children. They know us, but we haven’t kept up.
We could also go with the “denial” approach wherein Hubby and I create bland excuses to cover any abnormalities in Charlie’s behavior. No eye contact? Must be tired. Not running and playing with other children? Shy. Doesn’t answer your questions? Distracted by his music. I hate that approach, though, because it’s false and it makes it seem like we’re somehow ashamed of Charlie’s disabilities. I’m not ashamed. Hell, I’m proud. My kid’s got a lot less brain matter than most people and he still manages to do pretty well for himself.

So, I’m thinking I’ve got two options:

I could post in my status update on Facebook: For those of you who haven’t kept up with us, Charlie is disabled. He’s two, but cannot walk or talk. We are fine with that. In fact, I still think he’s cuter than your kid and KNOW he’s better behaved in a restaurant.
What’s that? Too bold? Too in your face? Well how ’bout option two:
I have a t-shirt printed up for Charlie that reads “I have brain damage. What’s your excuse?”

Sadly, Hubby seems to have vetoed both options.

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  1. Great Katy! This stuff is so freakin' true (funny sometimes, too)! I am dealin' with this now that Faith has started girl scouts. Weird looks and all or worse being ignored.

  2. Melio (MelissaInk) says:

    Cute shirt :)

    If you come across half as upbeat about Charlie's disability and progress in person as you do on your blog, then I think people will react positively. If they don't, then that's their issue (but you already know that).

  3. Personally I love both of your ideas…FB and the t-shirt! I also love the pics of Charlie…gets cuter every time…but I especially love the one of him looking at his daddy…adorable (both of them!)

  4. blogzilly says:

    I freakin LOVE the T-shirt idea. I may have one made for me.

  5. I think it should be like "pulling off a band aid." If it comes up in conversation, just give a short, frank, but upbeat as possible (which is how you are anyway) explanation and move on. Ultimately, it's not your job to make other people feel comfortable, you know?

  6. Girl! You've gone and done it again. We need to have T-shirts made!!!
    "I've got brain damage. What's your excuse?"


    I just take Eli and do my thing. Let people stare. I feel bad when I get home because I feel like I was the only person in a crowd…but we gotta do what we gotta do.
    If people do approach us, I am totally open and honest and positive about it all.

    You'll find your way….our lives are a journey, friend. Not a destination.
    I remember the hardest time for me was when Eli was about 8 mos old and still in a commercial stroller.
    People would tell me how cute he was, ask his age, then say, "Oh, is he crawling all over?"

    Ugh. What a bummer that was.

    But, my boy is 4 now, and we've settled into our status a little.
    I feel it's only going to get harder as he gets bigger and more obvious, so I'm growing a really thick skin…..
    …and I might have a certain T-shirt made up!!!

  7. therextras says:

    Excellent post, Katy.

    Esp want to compliment your bomb analogy. Your concern for others at the party and realizing it impacts your enjoyment, too – so insightful. So mature. Still the need to push-back against the ignorant, erm, less educated among us is valid. The fb notice is so typical of fb – no? Not like what you post here. Daddy is equally wise and restrained.

    Can't choose between the last 2 photos for my favorite – on this post. ๐Ÿ˜‰

  8. Princess Abigail says:

    What a beautiful family …. Charlie has grown SO much … and his grin is contagious. Happiness excudes from him … what a star.

  9. LOL, I told Mike I was getting a bumper sticker for Jude's kid kart that says "Strokes suck". I hear ya. What do you do? I just normally tell them he had a stroke, and is delayed, but we enjoy him.

  10. That idea for a T-shirt cracks me up! I have a disabled uncle, and though his disabilities are much more obvious, it's hard to watch him try to interact with people and have them treat him like he can't even understand English. He's a very capable person, up to a point, and he tries so hard that I want to just slap the waitresses and such that talk over his head, or get that "oh crap" look on their faces when they have to talk to him. A T-shirt like that would be just awesome. Perfect solution!

  11. Kelli TenHaken says:

    I love the t-shirt idea :) We run into the same issues when we are at large, extended family gatherings where people haven't seen Ruby for a long time. We are okay with her special needs, but it is exhausting to have to explain her to people over and over again.
    I love your positive attitude; it's refreshing.


  12. Nadine Hightower says:

    I like the t-shirt idea.

    But when he's older.

  13. Small Town Girl says:

    Haha, I like option 2. :)

    My guess is that word has spread at least somewhat and most people who you are aquainted with have heard at least something about Charlie and his disability.

  14. Wherever HE Leads We'll Go says:

    How cute is Charlie? Oh my word, I love those pictures of him!

    I think both of your options are hysterical. Sorry to hear that hubby didn't agree. I really like the t-shirt idea! I think you could market that.

  15. Hey there! Haven't been over here in awhile. I love the options, ha! And I love the thought of Charlie hanging out in his stroller listening to his ipod, for some reason that cracks me up!

  16. Just be you. If people are offended by your story of Charly, maybe they should think about why they might be offended.

  17. I love option 2! ๐Ÿ˜‰ These are great fall pumpkin photos, btw. He is pretty damn cute!

  18. I can so relate. The excuses thing? Strangers make them for me – When Elijah doesn't respond: "Oh, he's being shy. That's so cute." When the visual stimulation is too much: "Oh my, did he just fall asleep in the shopping cart? How funny." When it comes to strangers, I don't usually correct them. I mean, I don't really feel like going into a long explanation of my son and who he is in the checkout at Target.

    But, you're right, acquaintances are different. The bomb analogy is perfect – I've experienced how it causes people to shut-up and walk away – not exactly what you want at a fun get together. I think in some ways it's a art form to inform others of your child's disabilties. I'm sure with your positive attitude, you'll paint just the right picture. It'll be more like a firecracker or something. :)

    (By the way, thanks for visiting my blog awhile back! I'm so sorry I haven't responded sooner…I appreciated the advice and I'm adding your blog to my blogroll so that I can keep up to date on all of your adventures with Charlie.)

  19. Anonymous says:

    Honestly, the tee shirt thing might not be so bad, maybe with a milder message–Yes, I'm disabled, but I still know how to have fun!–or something like that. Wear it to a few gatherings, and then people get the idea and you don't have to repeat yourself at future gatherings. The only way people are going to know is if they're exposed to Charlie, and then he will move from "the kid with disabilities in the stroller" to "Charlie, Katy's little boy."

    It's the effort of indoctrination that can be daunting though…

  20. Love the t-shirt idea! I do sometimes wear my autism walk t-shirts.

    I have seen little business cards explaining autism that people can hand out to share what it is and how people can help/interact with the person. Maybe you could make something similar that would fit your situation.

    Then you could just casually acknowledge it when the subject comes up and hand them the card so you don't have to get into all the details.

  21. Love this post. Love the pictures! You make me laugh. We miss you…and Andre…and Charlie.

  22. Give or take a few minor details, it's as if you just read my mind. Perfectly written. Right on, right on!!

  23. LOVE the pumpkin pics! Charlie looks so happy…and the pic with his daddy is so precious…that is a blower-upper and framer!

    I've always been of the opinion that people are on a "need to know" basis. I know what you mean about the red flags…Jacob looks like most other kids, unless you see him wearing his earplugs or are a party to one of his meltdowns. Then you get stared at like your child has 3 heads…especially now that he is 14. But I'm used to that by now.

    I've known some parents in the autism community who literally have business cards made up that say something to the effect of "my child is not a spoiled brat, he has autism" and they hand them out to the old lady who is glaring at them in the Walmart when their kid is having a meltdown. Shuts them up pretty quick! LOL.

  24. I LOVE both options!!

    I also love how you worded it "dropping the disability bomb", Those looks on those faces that you see all the time? Yeah, it just keeps on happening, though now it's only the Deafness… and I just say "He's fine"… and if I'm feeling snarky… "He should be dead, Deaf is nothing compared to that"

  25. Nathan Charlan says:

    "I could post in my status update on Facebook: For those of you who haven't kept up with us, Charlie is disabled. He's two, but cannot walk or talk. We are fine with that. In fact, I still think he's cuter than your kid and KNOW he's better behaved in a restaurant."

    I LOVE IT!!! It is so true my child is better behaved and is cuter, yet they still get so sad for us???

    I love this post.