The other day I noticed that a friend of mine had changed his Facebook profile picture to a picture of his daughter. At first glance, I wasn’t sure whose picture it was.  Upon further inspection, however, I realized that it’s just a regular kid–one of those crazy neurotypical types–looking a little funny. I thought to myself, “I wouldn’t put that picture up of my child.” Mouth wide open, eyes looking askance–it’s probably a great capture of her personality, but not the most flattering image of her.  I consistently try to only put really great pictures of Charlie up on the Internet.

And it got me wondering–am I too worried about appearances? When I put up pictures of Charlie, I try to select only the best. I try to avoid eye crossing, drool, or anything that’s less than flattering.

I wonder if I’m being overly sensitive. I wonder if I’m choosing pictures where he looks less disabled. I hope that’s not it. I feel like I’m completely comfortable with who he is, but maybe not? I don’t know.

boy looks at camera

Looking at me a tad cross-eyed while working on the study of Africa

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  1. I understand where you are coming from.

    I post the pictures that I get of Alan, because, well, a.) they are the ones that I receive, and b) life is not perfect. Alan is who he is, and people just need to look past the outward appearance and see the person behind the things that might turn some off. I know that his life can be so much worse, and I know that everything has been tried to help him with his low muscle tone that makes drooling happen. The center was censoring the pictures that they were sending to me for a long time, until I told them that I would be grateful for any picture I get. He is my son. I am proud of him. No he is not the kid running in the field, catching the ball, or any other number of things, but he is mine. And I would be proud of him, no matter what.

    Life is too short to worry about the possibility of wondering what others might think of such things. And really I have to go back to something a nurse said to me once upon a time..God doesn’t make mistakes..all are perfect in his image. I hope that makes sense.

    Hugs, and as usual Charlie is adorable!

    • Becca:
      I do love it when you stop by and share some of your wisdom with me. You are right–it doesn’t matter what anyone else thinks, so as long as I’m being true to myself–that’s all that matters.

  2. I think we all tend to choose the best pics (or at least now you know you are not completely alone). I don’t think I would post a pic of my Kobi with her head turned the way she does and her eyes all to one side ( Nystagmus is a big way, it’s her only focus point). This is for the same reason that I wouldn’t post a pic of myself that isn’t flattering ( which is why you won’t see many pics of me). I think she is beautiful (Nystagmus, Deafness, low muscle tone etc.) and I like to show her at her best. I think that is totally, dare I say, normal.
    Of course, she is 13 and would want me to choose the “best pic.”

  3. BTW – I think Kobi looks so sweet with her little head cocked to one side and her little brown dancing eyes are full of wonder and joy. Just sayin’.

    I always love your pics of Charlie and the twins!

    • I think that we all love pictures of our kids that maybe the rest of the world might not get–that’s the nature of being a parent. I’m just more protective of my Charlie pics, I guess.

  4. beauty is in the eye of the beholder and the only thing i see in the picture above is that beautiful right hand in action.

    • Yeah, he’s getting righty out of the way as quickly as possible since I MADE it touch the sand paper! I’m a terrible mother.

  5. I’m right there with you. I edit Nava’s photos pretty heavily because of course I only want to see her and remember her in the best possible light. Does that make me in denial on some level? I don’t know-isn’t that a pretty normal parent thing to do? Only want to see their kids in the best light?

    In our case though the cross eye is visable almost every good pic because that’s just how it is. But yet, that doesn’t make it a ‘bad’ pic for me. So I think you as a parent develop your own definition of what a good look for your kids is-and that might be something that makes another parent cringe?

    Okay, must stop before I use another question mark-I guess my thoughts are pretty undeveloped on this!

    • I guess I don’t know what normal parents do. Or what parents of typical kids do, I guess I should say. Perhaps I will know better as I raise the twins.

  6. Oh yes! I soooo know what you mean. Just like the photo now on my blog of Carsyn. It is my favorite because he looks almost normal. The other ones where there is tons of drool or where his left arm is drawn into his body I avoid. I think it is natural.

  7. I love, love, love this: “… while working on the study of Africa.” What a fantastic mom you are to teach such great stuff to your barely four-year-old!

    On the point of pictures, it is extremely rare for Phia to look “normal” in a photo. Her nystagmus is terrible, her eyes rarely point in the same direction, her head is usually downcast, she thinks it is funny to stick her fingers in her mouth when I tell her to smile, etc… Of course, when I see her in person (which, of course, is how I usually see her), I see Phia the person and all she can do. When I see a picture of her that is not flattering, I will admit that it reminds me of all she cannot do. I absolutely love the occasional good pictures of her, and even the ones that are just okay. They make me smile, and I feel like they reflect the “real” her — the one who can do and has overcome so much. So, whether good or bad, I don’t know… but that is my take on it.

    • I love your take on it.

      The study of Africa was an idea my friend had. She said her Kindergarteners loved studying continents, so I figured why not Charlie?

  8. I think you are being realistic because you know that people judge by the cover! I have been reminded by this time and time again. Especially when our children are outwardly disabled, using wheelchairs or walkers, it seems like they have to continually proved themselves to the public. And whether I like it or not they are judging my child by her outward appearance.

    • Good point, Beth. I think it’s funny how people will assume Charlie can’t do one thing (like turn on the TV) just because he’s in a wheelchair. I mean, you don’t turn on the TV with your legs!

  9. I just had to tell you how impressed I am with you!

    I found your blog by clicking on a link on Love That Max.

    I’m a former elementary school teacher and the thematic units you do with Charlie are right up my alley. But I have an almost 5 year old daughter with autism who can be very difficult to get to sit still. Plus, she has both a receptive and expressive speech delay, so I’m never 100% sure how much is really “getting in”. So I’ve fallen into the trap of just letting the therapists do those kinds of activities with her.

    But you have totally inspired me! Seeing the pictures of you doing things with Charlie (even things he doesn’t seem to like that much due to sensory stuff) has again brought to mind how much I want to be the one playing play-doh and painting with my daughter, even if it’s hard!! I just have to keep trying and trying and trying….

    Just wanted to let you know…. I think you’re awesome and Charlie is one very lucky (and very cute!) little boy.

    I’m following you on Twitter now and look forward to hearing about more of your family adventures.

    • Hey, Lana! I’m a former teacher myself, which is why I tend to teach in chunks–SO much easier for lesson planning as I’m sure you know.

      Charlie can be the worst student in the entire world, and I taught teenagers! When he has a breakthrough, however, it’s the best feeling in the world. When Charlie was an itty-bitty baby, I read several books by Glen Doman who said, “don’t test. Just trust that they’ve got it.” It’s incredibly hard, but I do think he’s right and I know a lot of parents that taught their children to read with his methods. It’s hard when they’re not enthusiastically into the lessons you teach, but I just take lots of pictures and consider it all a giant experiment.

  10. Whatever the moment, whatever the expression…people who are initiated into the world of disability, be is mild or severe, see beauty, perfection and completeness in every expression and every picture. Whatever one chooses to post is an expression of wholeness to those who have eyes to see. If they cannot see that beauty, the hell with them…they do not count.

  11. Taking a completely over simplified approach to this, I sure don’t want unflattering pictures of ME on the internet, why would Charlie? :)

  12. I have just finished emailing a mum with a child diagnosed with the same syndrome as my daughter. I attached two pics of my daughter, they were my favourite ones, with her looking the most “normal”. Yes I know she didn’t always look like that, most days were drooling/seizure days but it is comforting to have pictures of her looking at her happiest/healthiest and most content and these are the ones displayed in our home, which bring a smile to my face.

    • Thank you for sharing that. You are right–I should just go with the ones that make me smile and not over-think it too much.

  13. I think that’s a got to be a normal parent thing to do. I remember when my daughter was in the PICU last year, and we didn’t know she was having seizures. I had taken some pictures to post on her blog, and had to pick really carefully because in so many her eyes appeared to be looking in 2 different directions, which I’d never seen her do before. After awhile I really started thinking about that, started watching her, and realized she was doing that very thing at very regular intervals, over and over, and each time she did, her heart rate and blood pressure would go up, she would turn her head to the side, and her breathing would change. I was the one who had to convince the doctors and make them consider if it could possibly seizures (it was). My sorrow at realizing her new seizures weren’t temporary febrile ones, after all, was blurred with the guilt I felt for even thinking about censoring the pictures of her that I didn’t find as attractive. I loved her, every single bit of who she was, exactly as she was .. but I never wanted anyone to judge any part of her at all, and felt very defensive, and was selective for the longest time. So I say it’s normal. Or else I’m a terrible mom. You pick, but be careful with me today. :(