Wednesday, August 6, 2014

My kid with special needs understands you, so don't ask me—ask him


"How old is he?" people ask me.
"Ask him!" I say.

"Which flavor does he want?" the guy at the ice-cream shop asks.
"Ask him!" I say.

"Would he like a balloon?" the lady at the bank asks.
"Ask him!" I say.

It's a phrase I've been repeating a lot lately: Ask him. Ask him. Ask him. Because again and again, people assume that Max is incapable of responding because of his special needs.

I took this in stride when Max was younger. Asking a little kid's mom a question for him is commonplace. But now that Max is a big kid, it gets to me. Max knows what's up. And he is more than able to answer questions, let alone simple ones.

His answers, people can't always understand. Max sometimes doesn't have his speech app handy, which speaks words for him. So I, Max's faithful translator, immediately pipe up:

Eleven.
Chocolate.
Yes, do you have a fire truck balloon?

The fact that people presume inability when it comes to Max says something about society's perceptions of people with disability. It's as if his cerebral palsy consumes all of him, rendering him wholly incapable, rather than giving him some challenges.

Of course, I am glad for the times when people want to talk with us, even if they are not speaking to him. People who stare or glare from a distance are rude. Max doesn't notice them, though; it's far harder to ignore the fact that people are speaking over you. It doesn't bother him now, and I hope it never does. How awful would it be if it made him feel inferior? How awful would any of us feel if people we met ignored us?

Technology continues to evolve; last night, I found out about an app at Indiegogo, Talkitt, that translates unintelligible speech into understandable speech. It could be a game-changer for kids and adults with speech impairment.

But I like to think that people can evolve, too.

So here's my ask:

When you meet a kid with disabilities, talk to him, not just his parent. If he doesn't seem up for interacting, back off. If he can't answer with words, don't feel badly. Some children may not speak like so-called typical kids do, but they are communicating. Other children may only be able to respond with their eyes but make no mistake, they are also communicating.

Presume cognition. Presume understanding. Presume ability.

33 comments:

  1. The most ridiculous thing is when people talk to people who are with me (I'm 22, by the way) and then I answer in an attempt to hint that they should address me and they take note of my answer, yet still keep talking to the person with me. WTF.

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  2. This literally happens almost every time we go on a field trip. Most people immediately assume that because they 'look' or 'talk' like a special needs child, they are incapable of answering questions. I'm to the point where when sonrobe asks "How old is he?" And then I will say, "Caleb, how old are you?" And he will answer. I literally just repeat the questions they ask to the child hoping they get the memo.

    Although, my favorite field trip ever was when the kids went to a local Marco's to make pizza. The manager treated all of our SN kids equally. One of our kids,says yes to everything, literally everything. So it went like this:

    Do you want pepperoni on your pizza? Yes
    How about sausage? Yes
    Peppers? Yes
    Onions? Yes
    Mushrooms? Yes
    Anchovies? Yes
    Finally the manager asked us. "What does he *really* like?"
    He likes cheese and only cheese pizza?

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    1. That's a lot of toppings for one pizza. I could never take the conflicting flavors

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  3. I think most people are likely trying to be considerate to your situation and perhaps feel if they ask the person with special needs; it may embarrass them if they are unable to communicate back to you properly or may cause an emotional response if they do not like interaction with others. I certainly think the best course of action is to address them personally but having a special needs granddaughter has made me so much more secure around kids or adults with "special needs". Lack of knowledge and appreciation for whatever disability they are dealing with is more likely the reason for the approach many use when addressing people with special circumstances. Sometimes you have to go back to where you were before a special needs person entered your life. I'll bet you have found you have changed greatly for the better, knowing they love, hurt, cry, babble or talk etc. You can learn so much if you take the time to speak to and reach out to another human being.....special needs or not. We are all God's children and all are reflective of him. (God)

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  4. Absolutely, folks should be directing their questions about the kid to said kid (even if said kid has a disability).

    I am, however, sympathetic to folks who start off by asking the kid a question or two, waiting, re-asking one question, waiting two beats and then asking the grownup who is standing next to the kid the same question.

    It’s not all that different from a NT kidlet in going through a clingy stage… my littlest is presently in a stuck-like-a-limpet-to-my-leg, won’t-so-much-as-make-eye-contact-with-strangers phase. (But she’s stopped biting her preschool classmates! This is progress, right?).

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  5. Ellen - Do you have any suggestions on what to encourage my kids to do when they encounter a kid with a disability they haven't previously encountered? Because I'm mortified when my almost 5 yo walks right on up to a kid on the playground and says "Hi, I'm ____. Why are you drooling?" or "What's your name? Where is your arm?".

    She'll more often than not happily play with the other kid (and doesn't do this if the other kid has a disability she's familiar with, e.g grandpa's blind, a cousin's on the spectrum)... but I'm thinking there's got to be a better way. Particularly as she gets older. It's just plain rude to demand such personal information from total strangers.

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    1. Excellent question. It's good to have discussions at home with kids, when they are not out and about, about children with special needs and how they are like other kids even if they look, speak, talk or walk differently. Kids with special needs like to play, watch TV, eat ice-cream, etc. And just like other kids, they love it when you go up to them and say hi. But sometimes it can make them feel funny if you talk about what is different about them, so it's good to just say hi and talk about other stuff. Like ice-cream!

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    2. As someone who has been on the other side of this, your kid is awesome! I was 10 before I realized that having someone of my age set greet me with a "hi, what's your name?" instead of "what's wrong with your legs?" wasn't something that just happened on TV.

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    3. As I sit here and read this this is my take on this. I have two boys in wheelchairs the have duchenne muscular dystrophy, my eldest has been in his chair since he was 9 (now hes 19) and my other boy has been in his chair since he was 10 (16 now). I taught them at a young age to be open about their disability and to educate the ignorant. My boys would rather have a child or an adult ASK whats wrong with them instead of staring or purposely avoiding them like they have the plague!! They always love it when the young children ask whats wrong because they are direct and to the point and after the question is asked they go about their day!! My boys wished more people (adults) were more like the young children when approaching them, they say it would make life so much easier!! Just my $0.02 worth!!

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    4. I'm a 23 Year Old girl I Also Have Duchenne Muscular Dystrophy I Hate it when people ask the person your with questions its like hey i can talk here to ask me not the person i'm with It angers me sometimes it's like hey have you never seen anybody in a wheelchair before we are like everybody else we just can't walk or can only walk a few steps i think some people need to be educated On Kids, Teens and Adults that have special needs and Physical Disabilitys

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  6. Another problem is that no one seems to have any desire to listen to or take me seriously. It could be my young age or lack of leadership experience, but autism definitely plays a role. They think I can't possibly contribute anything, but I can. I am just as intelligent, if not slightly more!

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    1. How maddening. Anna, I am sure you are helping people you meet overcome stereotypes.

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  7. Do you think sometimes they ask you because they are essentially asking you if it is ok if he can have (ice cream, balloon, etc). From a stranger's perspective, it would be safer to ask a parent than a SN child only to have the parent say they couldn't have the item. So, while I get that its annoying because you have already decided that the item is permissible (that's why you are in line), the person behind the counter doesn't know that. When they say "what does he want", they may actually mean "is it ok with you if he has...." Maybe a better response on your part would be "Yes, he can have....please ask him what kind he wants" Remember that you are dealing with store employees that could be young or uneducated about these issues. They may think they are doing the right thing by looking to you for permission.

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    1. Nope. They're actually asking what flavor of ice-cream he wants. If they wanted to say, "Is it OK for him to have ice-cream/a balloon/whatever" then they would say that.

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    2. ...guess there is little or no training module in any company for dealing with people with disabilities. Agree or not!

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  8. I see the point about asking parental consent or if it involves possible allergens. I too have this pet peeve when people ask my mom instead of me what I like or the best way to help me. I use a wheelchair & have no cognitive issues. I'm a 22 yr old woman with a college degree. I have small stature so people assume I'm a child and say does your mommy know you are buying a scary movie or talk baby talk to me. People still address my mom instead of me. My mom ignores the person and I answer myself. I'm a self advocate. I find it rude. It can be hard because I want to be seen as an equal to adults in the community. For Max maybe have him use his speech app to answer questions and ignore questions that should be directed to him and say Max someone's talking to you.

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    1. I hate the baby talk thing. One girl who was in my PE class talked to me like I did not know anything. To make matters even more maddening, she was in the grade BELOW me.

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  9. Really glad you wrote this. Presuming incompetence is such a frustrating thing!

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  10. I would presume value and human dignity -- not cognition and ability.

    If a person has less cognition and ability, are they any less human or less deserving of being treated with respect?

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    1. Not at all. Like I said, I would like for people to presume cognition and ability instead of presuming the opposite--the complete lack of them. But, yes, presuming value and caring about dignity should also be in the mix.

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  11. Even if my son wont look at you(he has autism, its hard for him but we are working on it) he will talk to you if you talk to him. He's 10 and is sadly starting to realize that people wont talk to him but will to his 7 year old NT sister.

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  12. I'm an adult and this still happens to me just because I'm sitting in a wheelchair. When a friend and I walked into a Denny's, my friend was asked where "she'd" like to sit. My friends know to refer questions to me. Most upsetting, the hostess was twenty-something. Haven't people learned yet?

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  13. I always just repeat the question they ask directly to Coop and once he answers they take my cue most of the time! I'd love to meet Max one day and have a chat! Maybe on a Disney cruise ;) Bron

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  14. Great post. I always encourage people to recognize my daughter's abilities but frequently they focus on what they perceive to be her inabilities. It is so frustrating. Right now, my daughter is nonverbal but she is communicative--via sign language and gestures. She wandered away from our house a few months and the officer who returned her asked if she was "mute" my heart sank. I don't know why but nonverbal is so much easier to hear than mute.

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  15. I have the opposite problem. My son is 2.5 years old and cannot communicate verbally and only communicates nonverbally with affection. We are unsure of his mental cognition. He is also not mobile and has a gtube with no explainable reason why and no diagnosis. He looks "normal

    People try to talk to him all the time and I don't know what to say. If I tell them he cant talk, they try to get him to wave. When I say he cant do that, they try to shake his hand by physically initiating themselves. He has a hand sensitivity and hates them being touched. So he cries. I'm left feeling awkward and bad.

    Can you help me by giving me some suggestions? I really struggle with this.

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    1. Julie, I understand why you feel bad but please try not to, people won't take it to heart. Perhaps it would help to head off hand-shaking and wave attempts by saying what sort of interaction your son would like, and saying his name? E.g., "He really likes when people just say 'Hi, Grant' to him, right, Grant?" I I did that a lot when Max was little and nonverbal/less interactive.

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  16. This got me thinking. In my line of work, I sometimes come into contact with people who have physical and/or mental disabilities. After several years, I think I'm pretty good at addressing the person with the disability, and not someone who is accompanying them. I think that often people do address the "typical" person accompanying someone with a disability out of presumption that the person won't understand or won't be able to respond. I think sometimes, though, it's a fear of not being able to understand the response, in which case some people's instinct is to play along to the person, and look to the other person for 'translation'.
    So my question is this: If I've asked a question of someone whose speech is not clear (to me, anyway) and have difficulty understanding the answer, I ask them to repeat once, and if I still don't understand, I say I'm sorry but I'm having trouble understanding and ask the person they're with for help. Is this appropriate handling of the situation?

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    1. Jack, I'm not sure how an adult with disabilities would respond to your question, but I can tell you that when this happens with Max I have no problem translating what he's said.

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  17. This is such a challenge I have with my little Brookie. She is nonverbal but very expressive. People talk "over" her all of the time. I often have to ask them to greet her, not pat her on the head like a pet! She smiles like crazy and shakes her head no when she doesn't want something. I get your frustrations...

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  18. Our mantra has always been, "Presume competence" and we try to have Nichole demonstrate an easy non-verbal interaction when in these situations, like to eye point to her choice or introduce herself on her device. Oddly enough, suddenly she's a rocket scientist since she can generate speech on a computer. LOL

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  19. My dad used to tell people to ask me, when they would ask him questions about me. As I got older, and a tiny bit less shy, I would say "I can understand you, you know." And then answer their questions. It was funny to watch the reactions I would get. This hasn't happened when I'm out with my husband (yet,) but I've already prepped him and let him know to let me handle it (he can get very protective when people stare or glare so I don't want to know what he might say in this situation)

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Thanks for sharing!



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