Monday, December 27, 2010

The question that still hurts

Greetings from snowy Vermont! We're "stuck" here in Stowe because of a major snowstorm at home. I like me a good blizzard, but it is exceptionally wonderful to be forced to extend your vacation. We're all happy, especially Max, who loves to stay in a "ih oh-hell" (that's "big hotel"). This trip's been filled with all kind of treats like ginormous Dutch pancakes, a dip in a heated outdoor pool and a sleigh ride (coming up tomorrow).

Vacation is mostly a great escape for me. Our days are free of routines, there's someone picking up very plush towels off the floor and making the beds, we eat out for our meals, I'm not playing Julie the Cruise Director of Max's therapies, I can sit in a hotel lobby and listen to a piano player (as I am now). But vacation can be an unwanted reality check, too; away from all our friends and family, it becomes very clear how some people view Max. Especially kids. More than once here, a child has looked at Max and asked, "Is he a baby?" I'll usually say something like, "He's eight! He just doesn't talk like you do." Sometimes I'll add, "He loves chocolate ice-cream! Do you?" which usually works as an ice-breaker.

I've developed a thicker skin over the years about this stuff. Yet the comments from children continue to prick me. I wish they didn't, but they do.

It's strange: Out of everything I've gotten past about Max's stroke and the cerebral palsy, this is one of the few things that still pains me. Or, well, maybe it's not so strange that it should bother me when another child can't immediately see my boy for who he is: an awesome kid.



  1. I feel it. I think I just want Mikey to be accepted and other children is an area I feel utterly out of control of.

    Enjoy the rest of your break. And remember we see how awesome both Max and Sabrina are! Xxx


    Whenever I visit my family
    I wonder why they are staring
    People arent used to seeing a kid attached to a tube
    In NYC it is not that uncommon

    I tell them he is a superhero


  3. Hugs Ellen.
    I totally get this. I hate the stares. It seems it is getting worse the bigger/older she gets. Maybe its cause the gap is getting bigger?
    Just know you are not alone in your feelings. Enjoy your vacation! I am so jealous!

  4. I love that picture. It's just inspired a blog post from me. My mom went to visit my grandma in West Orange & was supposed to drive home today, but got stuck under 30in of snow. Here in Baltimore we got "snow." I can still see grass. Weird we didn't get more b/c I thought it was comin from the south.

    As far as asking if max is a baby, um, does he look like a baby? That's an odd one I think. I have a friend who is 57 and probably less then 4ft tall and can no longer walk (powerchair user) due to her disability. All her adult life she's gotten kids trying to hide the fact that they're trying to figure out if she's a kid or a grown up. I've been with her. She goes up with a big smile and explains that you can get older without getting bigger.

    Different issue though. I don't know if that helps any.

  5. We get it too. One of my cousins kids, age 5, pointed at kade and asked " why can't get get on the floor and play with us?". Hard to explain to a kid what is going on with our complex kid.

  6. The innocent, child-like questions don't bother me as much as when kids and/or adults glare, stare, or give us funny looks while walking around with Jake.

    Reality checks in any way, shape, or form can be a painful reminder of how things could be or just aren't.

    Hope you continue to enjoy your vacation!

  7. I feel the same way, but I think I can excuse it more with kids than adults, kids are genuinely curious, and lately I try to convince myself that this is my opportunity to educate them, after all, I would rather them ask questions instead of just walking away as if Hailey has some kind of contagious disease. The thing that gets me the most is when I tell an adult that Hailey has c.P. and their response is "oh, I'm sorry" I really hate that one! My response to them is usually something like "oh no, don't be, we are very lucky to have her, she is such a beautiful little girl" If anyone has a better response to that I would love to hear it. Thanks :) Enjoy the rest of your vacation Ellen.

  8. Thanks, all. There's comfort in numbers.

    For years, it's never been the adults that got to me (well, other than those who blatantly stare) as much as the kids. I know they're curious, I know it's better that they speak up than just wonder because then I can explain but...still.

    Cheryl, Max definitely looks like a kid but I think the drooling is the thing that makes him seem baby-like. It doesn't bother Max, and so we've decided not to medicate him for that now.

  9. Ellen, Me asking if Max looks like a baby was me being sarcastic. OF COURSE he Doesn't! It's the bibs / bandanas isn't it? *lightbulb moment* That makes sense! Hum... I wouldn't go the "he's a cowboy" route (the first thing that popped into my mind) if it was me... I'm stumped...

  10. Ellen,
    I run into that a lot in teaching and in some ways I think it is "our" fault as adults. We are constantly telling children that they are babies if they suck their thumb, drink from a bottle, drool or don't walk. We almost use the word baby as a pejorative if you think about it. And of course for children, their minds are so literal, that they always try to follow the rules and have a harder time understanding the variations in the human experience. That is one of the reasons I recommend to parents to have their children use a wheelchair instead of a stroller when they are old enough to attend school. It helps the other children to understand that there are many differences and that not walking does not make you a baby. I think the more we have real inclusion in our schools, the less this will become an issue for children with differences in the future.

  11. I love the "ih oh-hel" and i def love that Max! Brace yourself... i hear the sting never truly goes away. But on a better note I Love That Max!!!

  12. Thanks for sharing this, Ellen. It's good to get the word out that the stares and questions can really hurt. I'm a new visitor (via Twitter) and will be back to read more about Max's adventures. LOVE the photo of him in your masthead! Cheers from Denver, Karen

  13. While you are stuck (poor you) in Stowe make sure to check out the swimming complex - it is actually a foundation - if I remember - Giant deep pool and manageable kid area - very clean and affordable

    I am more forgiving of children than adults - Now that Nathan is in middle school He is able to join in regular school clubs - He loves choir - And I love that he loves it and is so enthusiastic - and then the curtain goes up and reality sets in - "Who's that tiny kid?" "Is that really a middle schooler?" "Why is that kid in the front making weird faces?" "That kid with the glasses should not be right in front"

    Luckily - Mr. Hommez - the choir instructor - bless his soul - loves Nathan and his enthusiasm and keeps him front and center

    It's hard to not scream out some not so friendly thoughts but I take a breath and know that the tiny kid with glasses in the front making weird faces is mine and he ROCKS!!!!

  14. As much as I feel your pain, I also think it's important to take these opportunities as teaching moments. Kids do not intend to be cruel (for the most part...we hope!), and I think your "chocolate ice cream" ice breaker is a great way to help kids understand the differences/similarities between all kids. Kids stare because they want to know more. Hopefully, if you teach them about Max, they will learn to see people with super powers for the amazing kids..and adults...that they are!

  15. This one bothers me too, Ryans only 2 1/2 and I get kids his age saying "look mom, a baby!" I wonder what a 2 year old sees that makes him look so different from them?

  16. I geusss I haven't really given any child a chance to say anything yet.

    One day at a mall, a little boy and his mum walked up to Mango and I. Mango was in his stroller, this boy was walking. They were about the same age and size. The boy kept waving and shouting at Mango, who didn't respond. Finally the little boy broke free, came over, reached out and PINCHED Mango. I felt my heart break, and I went into shock. After that, I went into anger.

    I know how kids can be. I don't want him picked on or hurt ever again if I can help it. When a child comes near, before they even speak, I always go into a line of "This is Mango. He doesn't play like you guys yet, we're still learning. No, he can't catch the ball, his eyes don't work as good as yours. Keep talking to him though - see his smile? That means he likes you and likes to hear you talk to him."

    But now he's finally starting to 'bloom', and I really need to find some kids (GOOD kids!) for him to interact with. I don't know how I'll handle it......

  17. That's the hardest thing I think, harder than dealing with doctors or insurance or which school or any of that stuff. Thing is, there's not much you can do--kids will be kids. You can only hope they're asking out of open-hearted curiosity and not wanting to be mean.

    The hotel sounds so nice! What a great vacation! Max has the right idea!

  18. The "chocolate ice cream" ice breaker is so smart. I'm going to borrow that one from you.
    Glad you are enjoying your (well-deserved) vacation. xoxo

  19. I get it too. For me the sting, is more of a burn. It honestly bothers me a ton when kids ask the questions or give the looks. WHY does it get to me so? I know they are curious, and that doesn't bother me so much. I try to teach and educate and be nice about it. However, I just love feeling like we blend in, and most of the time adults tend to hide their stares or curiosity better. The kids are more obvious with their astonishment at our differences. Then, I am reminded that we are different and different enough that it is obvious to a child. It's a bubble burster for me, and it can ruin a great day at the mall. Obviously, Emma is in a wheelchair, so we tend to get more stares. But, somehow I like to think we are just like everyone else, blending in okay most days anyway; and the stares and the blatant questions from the innocent slam me back into the reality of who we are. I am okay with who we are, but I am worried that others are not okay with who we are. I desperately want Emma to feel like she belongs in this world, and that people like her. I worry about how she will view herself. I totally agree with Lisa. She made an excellent point.

  20. I so get this. I always pray that a stranger won't ask how old Ben is -- because he's 16 but looks the size of a 6 year old.

    I agree with what Lisa said -- it's common in our culture for parents to reinforce the concept that if you aren't able to do something, you're a baby (e.g. they praise kids who reach certain milestones by telling them that only 'babies' do it the old way).

  21. My son (also named Max!) is often on the receiving end of similar stares and questions from kids (and sometimes adults). With kids, I find that they are usually just curious as to why Max is different and why he can't do the same things they can. Although I have had a very recent and very unpleasant experience of a young girl asking "what is wrong with him?" and making a face of total disgust. Ouch. That seriously hurt and I had a good cry about that one. Sticks and stones...I find when adults ask me how old my son is they usually stop asking questions when I tell them he's 5. *Sigh* Anyway, I get this too. Thanks for sharing.

  22. The first time a child made an innocent, yet brutally painful comment about my daughter, I bawled my eyes out for an hour. I don't generally cry now (2 years later) but it still stings. I'm waiting for this "thicker skin thing" to develop.... ;)


Thanks for sharing!