Sunday, September 27, 2009

My child may have a disability, but hello! His personality isn't handicapped

Baby Max and his big personality

Friday, I had to take Max to a pediatric hematologist; he has two blood mutations that make him more prone to clotting, part of the suspected reason he had a stroke at birth (a lack of oxygen also supposedly contributed to that catastrophe). I just wanted to make sure things were status quo. Max is fine, and not at risk for having another stroke.

This doctor was very smart, charming, helpful. She made it clear I had better haul my butt to the doctor myself, given that Max inherited said mutations from me (how awfully adorable, we have matching blood mutations). Max was very pleased to have his blood pressure taken, he LOVES that machine, I may have to get him one for his birthday.

As the doctor was examining him, to distract Max I started doing my usual ice-cream routine:

Me: "Does Max like vanilla ice-cream?"
Me: "Does Max like strawberry ice-cream?"
Me: "Does Max like...CHOCOLATE ice-cream?"
Max [vigorously shaking his head up and down and grinning like a loon]: "YES!"

The doctor looked at me and said, "Oh! He has a sense of humor."

OUCH. I mean, COME ON! The kid has cerebral palsy, but one of the symptoms of cp is not incapacitated sense of humor.

It drives me nuts when people—let alone doctors!—don't understand that someone with physical disabilities can have a completely intact personality.

Max may not walk or use his hands perfectly, he may not talk fluently, but inside that body lies one fully-functioning, full-blown personality.

Ever deal with misguided assumptions about your child's capabilities?


  1. OMG--I could have written this one. Yes, I get very frustrated about how often people underestimate these kids. It gets worse too the more physically some, but it is a struggle when she does. It is labored and often low, but she talks. Granted, she sounds a like a deaf person when she talks or someone who has been running a long race, but she talks. I only wish she would do it more often. She understands everything (almost) that is said to her, and she very much understands what she is trying to say. She has a wonderful and charming personality. She gets jokes and makes jokes. I think she has pretty good sense of humor for a 5 year old. I really hate the way that people try to peg a child (either cognitively or personality wise) based on speech and physicality. Oh Lord, don't get me started. I could write a book. Though I have to admit, it is a particular level of freaky frustration that I feel when doctors make such assessments. Oh, I am touchy about this one right now. Do you know how miraculous it is that a kid with CP can even talk? Well, of course, you do. But, most people don't get it. I am just so thankful that my Emma (who is so hurt) tries at all. It kills me when family or in laws or whoever act like it doesn't count because it isn't clear enough. It hurts to see Emma trying to win them over, but they aren't impressed because she is quite "typical." How can people be so dumb???

  2. You know what I can't stand? "But he's so cute though!" Need I say more?

    Love that baby picture of Max!!


  3. Oh my - this happens a lot to T-man. He too has a great sense of humor, his teachers know it, but others, even many of my family members act as though he isn't there and talk to us and not him and are amazed when he does something funny or laughs. That is what makes me the maddest and the the most sad, when people ignore him. and what Kate said, when they say, oh, but he's so cute! darn right he is! and he has an awesome personality too! take the time to find out!

    great post as usual Ellen! thanks!

  4. Well, since Luke (6) is non-verbal some people automatically assume he should be treated like a toddler. Last week the new ENT implied that getting the next set of tubes (#9 in 4 1/2 years) wasn't a big rush since his problem is chronic - as if it doesn't matter that he can't hear with fluid behind the ear drums and it probably doesn't feel real good. Then there are the folks who give up after trying to interact with him 1 time. They write him off due to the autism.

    The cool thing, the kids in his class at school (1st graders) just take him where he is.

  5. "Misguided assumptions" is a polite way of putting it!

    Some people are just flat out ignorant. Others just aren't comfortable with any person who is outside "the norm" (as they define it).

    That's their problem!

  6. Man oh man! On a recent trip to the pediatrician we got a fill-in since the office was so busy. She asks me earnestly, "does he have a breathing machine at home?" Uhhh, hello? CP is in the brain. Just because his brain was injured that doesn't mean his lungs are. All kids with CP aren't former preemies!!!! SO frustrating.

  7. Constantly! I think everyone sees the disability and forgets that there is a REAL person underneath---who has feelings, and is not necessarily mentally disabled. It's so frustrating. GO MAX!!!

  8. The comment I've heard more times than I care to count: "She is so cute you would never know anything was wrong with her.". Who said anything was wrong? She has CP, but that isn't wrong!

    One other thing: for my daughters first Christmas, a friend bought her some clothes. She was so concerned about what type of clothes to get because she wasn't sure if Emily could wear normal clothes. What kind of clothes is she supposed to wear exactly? Do we need to go to the CP special clothing store?

  9. Oh man, maybe she was just trying to be funny???? Who knows. But yes, we have dealt with this before. The thing that bothers me is when they talk over her about her like she isn't there. Like they are critiquing her, right in front of her!

  10. The light was really going off in my head when I read this one. Yes, we've had incidents like that way too often! I often have people say things like, "Wow, Daniel is smart!" in a very surprised tone. It's not a regular "Wow, Daniel is smart," but rather a "Wow, this kid had a stroke, yet he's smart" kind of comment. You know what I mean. The last time I checked, you don't need a hand and/or a foot to sound out a word or complete a math problem. Daniel asked me when he was four, "Why do some people only care about what I'm not good at instead of what I'm good at?" I really didn't have an answer. It really irks me that in some people's eyes, everything about him - even his natural talents - relate back to his stroke.

  11. I just read Kate's comment, and I agree 100%! I hear the, "he's so cute" comment a lot, too. Yes, he is pretty darn cute, but he's more than a cute face and a weakened left side. Hearing comments like those makes me sad for those who make them. They're really missing out on getting to know Daniel for the wonderful person he truly is.

  12. Um we have THE BEST personalities, just saying.

  13. I'm always amazed by people's stupidity.

    What Kate said.. I used to get that a lot, after I ran through the laundry list of diagnoses, like his cuteness made it all ok. The thing is, it has ALWAYS been ok, for me anyway. I have a hard time with the pity from other people, like my joy as a parent is diminished by my child's disabilities.

  14. Loved this post! My boy may have a disability and it is a part of who he is, but it's not ALL that he is. He has depth, and spunk, and spirit!


Thanks for sharing!

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