Wednesday, June 8, 2011

How to ask about my child with special needs


The comments on yesterday's post were absolutely, positive awesome. I hope a whole lot of other parents out there (i.e., ones who don't have kids with special needs) read them and learn from them. Heck, I learned from them. Much wisdom there.

An interesting topic came up toward the end of the day: people who ask about your child. What's the "right" way to do it? Is it appropriate? What makes you want to go "ARRRRGH?!"

First off, let's assume the question is coming from someone who does not have a child with special needs. Because there are no boundaries (for me, anyway), with other parents in the special needs universe or with adults who themselves have disabilities. It's like within ten seconds I am telling them about the brain damage and the Botox for the drool and the nasty scar I have from the c-section. OK, not that.

Let's assume we're talking about how you deal when parents of so-called typical kids or strangers ask about your child. This doesn't happen often, but I have had people say "What's wrong with him?" I've had the same reaction Jo and many of you have: WHY ARE YOU SAYING THAT? It's a suck-y question, as it focuses on the disability and assumes something is "wrong." Also, it's rude and instinctively makes you want to respond: "Nothing. What's wrong with you?!"

As Debbie put it on Jill's post, "You can ask what her diagnosis is...but when you ask me what's WRONG with my child, I will probably tell you nothing. And get defensive and sad because while she has special needs, there is nothing wrong with her." And as Natalie said, "Anyone over the age of six or so should know not to use that terminology."

In general, I think it's better to speak up than to just stare—but it all depends on how you ask the question.

I have also had people play Guess The Disability. A common one: "Oh, does he have autism?" I'll usually answer, "He has cerebal palsy." If the person keeps asking questions, I'll keep answering them. Like I said, I've learned to use these opportunities to educate and raise awareness. I want people to know that babies can have strokes, that my son is not a tragedy, and that kids with special needs are in many ways just like other kids and should be treated as such. All bets are off, though, if I'm in a pissy mood. I am not Mother Teresa. Like any mom out there, sometimes I just don't feel like talking.

The best conversations I've had with other parents who don't know us well, and even with strangers, have been the ones that have started off with some nice observation about Max—like, "He has the best smile!" Or ones that have not started off about Max, and then circled around to him. It's common sense: Once you have rapport with someone, it's easier to get personal.

So, how do you guys want to be asked about your child with special needs?

44 comments:

  1. This is a tough one. I have people ask "what's wrong?" with my son more often now. One mom had a child Down's who asked me. Couldn't she have thought of a better way to broach the subject? Is it too rude to say, "there's nothing wrong with him but he is diagnosed with cerebral palsy."? I don't mind educating, but I don't want people giving my son a complex, either, with their dumb questions.

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  2. Maybe it's because of that open nature, or maybe it's because I so want to spread awareness or advocate, but I find myself at ease as long as the person asking seems to have a genuine desire to know.

    (*note-this does not include the "oh, what's wrong with him?" statement from the adult--who should know better--who's also sharing attitude or staring at my kid like he's a bug and needs to be squashed).

    I always think that being able and willing to talk about the many different diagnoses my kids have might somehow help educate just one other person, raise awareness about one of their accompanying diagnoses, or something in between.

    Like you, sometimes I am just not having the best day. Sometimes, I am just a mom in mama-bear mode. So I'm not perfect - sue me! (disclaimer: please don't sue me - I've got a husband, three kids, and two dogs, and that's about all I have to my name!)

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  3. I don't get a lot of adults asking me what's wrong but I do get a lot of curious children and that I love! What better way to educate the children of our future about the diversities in our world than from someone who knows about it first hand and can explain it to them in easier terms. And after awhile of spending time with my son, they quickly realize he's just the same as them but he can't walk or talk...but they always know what he is saying!

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  4. I'm finding this very helpful. I don't have kids with special needs so I'm basically learning the ins and outs through you and a few other blogs I read.

    I do, however, work as a grocery store cashier and I see a lot of kids, and adults, who obviously have special needs. Some I see once or twice but not often, others are regulars. And while I do usually make a point of smiling at the kids and interacting with them just as much as I do the "typical" kids (and honestly the special needs kids can tend to be less bratty and 10 million times sweeter which makes me want to interact with them MORE than the "typical" kids) sometimes with my VERY regular customers who I've developed a bit of a relationship with, I am tempted to get to know them a bit better and part of that is, diagnosis. Now, even if I do learn the absolute BEST way to ask this, I still might not just out of fear of over-stepping my boundaries, but at least I'll know the best ways. Because while it should be common sense that "what's wrong with her" is wrong on so many levels, that doesn't mean the best way to ask it is obvious to people who doesn't live in that world.

    So while I might be too nervous to use this knowledge, at least I'll have it. So thank you!

    Also, as adorable as Max is, he'd so easily be one of my favorite customers. There is just something wonderful/magical/amazing about the kids who aren't "typical".

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  5. My biggest hot button in being asked 'What's WRONG with them?' There are so many other ways to phrase the same basic question without sounding half as rude and nosie. I don't mind when someone does the 'Guess the Disablity' game as Ellen calls it.

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  6. I don't care HOW. Really. I've said this before, I know. I look at the person's intent, not their language. Hell, I can screw up when talking, too, so I have no superiority complex when it comes to the "right" way to say something. I find it exhausting to always be hyper-watchful, looking for someone who does or says something "wrong" so I just refuse to play that game. People can only hurt you if you let them. If someone's choice of words, through ignorance or awkwardness or even meanness, can make you feel like crap, well, what does that say about you--that you are a follower and not a leader? What ever happened to "names can never hurt me?"

    Take the "wrong" word, for example--it doesn't bother me, because I know what most people MEAN when they say it. If it did bug me, I'd say "Well, the word 'wrong' could be construed as hurtful, but his medical condition is ....." or "Go on ahead and ask him--he can tell you all about his medical issues!" A few years ago, I met an old lady who asked me "Is your little boy retarded?" (Yes, the R word). Turns out, she had a loved one in the same boat, only back in her day, the term wasn't regarded as derogatory.

    You know what they say about ASSUMING--so you can't assume that people have hurtfulness in their heart when they misspeak. Who hasn't ever said the wrong thing in a situation where they aren't familiar or comfortable? I know I have. If I want people to forgive me when I say something stupid, I had better give as good as I get.

    You can spend your life looking for hurts and insults, or you can assume that people mean well (and most of them do, they're just clumsy) and take the opportunity to make a new friend and have one of those teachable moments. It's really up to you. I find I'm happier doing it my way, and I don't have to carry around that heavy chip on my shoulder either. It's all about attitude.

    I'll shut up now.

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  7. Hi Ellen, I have never commented on your blog before, but I have been reading for quite awhile. Thank you for starting such a good discussion. My son has vision and hearing problems along with a chromosomal deletion. I actually wrote a post about an experience at the pediatrician's office a while ago. When my son was a little less than a year, we had three separate parents in the waiting room ask about his glasses, within the span of 20 minutes. I think the best way to ask would be to share a personal story, give a compliment or at least smile. The worst would be to just ask "why" because my response will ultimately be: "because he can't see. Why do YOU wear glasses?"

    Right now, people still don't really know that there's anything all that different about my son (other than the glasses and hearing aids) since he is young and very small for his age. I actually think the hearing aids (acquired more recently) help a little with the questions because it shows people that I'm not just putting fake glasses on my kid. I think the worst interactions I've had were my mother in law's comment that it was easier for us than "normal parents" because he can't walk yet and a woman who took one look at my son and doubled over laughing and pointing. (Way to make fun of a then-seven month old.)

    I have to say, though, that public perception is probably one of my biggest fears as my son grows older and his disability is more obvious. If people manage to make fun of an infant, I can only imagine what is to come.

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  8. I'm relatively new to this blog, but I'm learning tons. I definitely understand that no one wants people asking what's "wrong," and that there are better questions, but what are they? What do you WANT me to say?

    Should I open with, "that's a really great wheelchair?"

    Or, "oh, your daughter seems very sweet. Is she ataxic? Did she have a stroke? CP? Terminal illness? Down's syndrome? Premature birth?" The guessing game seems pretty rude too.

    You're all very clear that "wrong" is not the right way, but the uneducated masses need you to spell it out for us: WHAT DO YOU WANT ME TO SAY? WHAT'S A POLITE QUESTION?

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  9. While, "What is wrong with him?" rubs me the wrong way a little, I'll smile and tell you. Because I'd rather you ask then just assume I'm a terrible parent who is doing a bad job riasing their kid. Or that he's just a "bad boy." Is there a nice way to ask why someone's child is different? Probably not. I think the number one favorite way for me to open up to someone about my child is when they say, "My grandson/nephew/goddaughter has autism. Does your son have something similar?" But that isn't always an option. I also like, "Can I help?" when we have a grocery store line/leaving the park/church meltdown.
    I'm afraid the burden is on we, the mommies and daddies to be open. Nothing is going to change, our sweet babies won't be accepted and understood, if we act cagey about it. And most people are curious and sympathetic.

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  10. Orly - a good starting point in any polite conversation is always, "Hi, I'm so-and-so, what's your name?"

    we ran into a mom & her son in our neighborhood last summer while out walking. My son has a tracheostomy & was still on oxygen at the time. I said to my son, "can you say hi to the boy?" and his mother about fell over - her son has Down Syndrome, and apparently she's not used to that sort of response. Once she saw our oxygen tank in the back of the stroller, she said, "oh, that's why you didn't freak out when Billy walked up to your son."

    Once you get into a little conversation, I find questions like, "I see he has oxygen" or "what's the thing around his neck for?" to be good questions - they're specific to my kid, without expecting an entire medical history (which, frankly, is none of your business).

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  11. I must say this has all been very interesting to me and it’s great that people are genuinely interested in having this dialog. Some of the comments could be read a little harsh so I want to say up front that there is no harsh vibe in what I am about to say. There won't be one way to approach this situation that will make everyone happy since we are all individuals with different personalities. There are certainly some things to avoid like gawking or asking "what's wrong with your child?" I guess I wonder why people who barely know you might need to know your child's diagnosis. In situations where strangers are interacting and will probably not interact beyond a very casual and brief interaction, smiling and chatting about whatever you might chat about with anyone else in this situation (weather, local sports team, etc) is fine. As you get to know people better and want to be a part of their lives, become friends and are therefore genuinely interested in details about their children, it most likely will naturally come up and it doesn’t need to be a forced, uncomfortable thing. I might be under thinking this, but in public situations with strangers how about just smiling and interacting as you would with anyone else?

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  12. I'm going to go out on a limb here and say that pretty much anyone who posts on this thread because they want to know what to say is probably not going to say the wrong thing - because you are the kind of person who has empathy, even if you are uncomfortable. I love people who are empathetic, even if they say the "wrong" thing (pun intended).

    I take my cues from the other person and try not to worry about the right words too much. Sometimes people will use language that I don't care for, but if I can tell from their demeanor that they aren't insensitive clods then I let it go. It's not too hard to tell when someone is nosy and insensitive vs. genuinely interested. If someone is genuinely interested, then I take the time to share and/or educate.

    One thing I've noticed, too, is that people who have a family member with either Down syndrome or CP (we have one of each!) tend to "linger" around, not asking questions, waiting to see if I'll say something. That's especially been the case with my son - I think it's because he's still young enough and his facial features are mild enough that they are afraid to ask if he has Down syndrome in case they are mistaken!

    My tips:
    1. Acknowledge the child first - smile, make eye contact, talk to the child if age appropriate.
    2. Make sure that the mom realizes that you really looked AT the child, not THROUGH the child ("Your son has the most gorgeous eyes/sweetest smile/beautiful hair/great sense of humor/looks just like you" or "I love babies!" or "What a precious gift you have!" or something...nice).
    3. If you feel that the mom is open to talking and you'd like to know more, say something along the lines of "If you don't mind my asking, what is your child's diagnosis/condition/whatever? I'm curious because I have a family member with X -or- I'm a teacher and want to learn more about Y - or - I'd like to help my child understand and appreciate differences - or something that indicates you have a genuine interest and aren't just being nosy.

    I hope this helps someone just a little bit. My comment has gotten so long, I'm thinking I should have made it into a separate blog post!

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  13. Um, what Mo, Kadiera, Julie and Andi just said!!!

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  14. I think I'm with Andi on this one. I don't think it's 100% WHAT you say as HOW you say it. That's why I keep putting WRONG in all caps. Don't stress the WRONG word.

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  15. I think the best interactions with I've had with adults go something like this:

    stranger: (to Amelia) "Oh, you're so pretty!"

    me: (smile)"thank you!"

    s: "Is that your doll?"

    m: "Yes. That's Anna."

    s: "Well, nice to meet you Anna, I'm ________. And what's your name?"

    m: "This is Amelia"

    etc, etc, etc.

    Take a minute and talk to my 5 year old as you would any 5 year old. She may not talk back to you, because she's non-verbal...but she's thrilled by the attention!

    And here is an actual conversation I blogged about, that we had with another 5 year old at the park one day last year:

    Boy: "Does she talk?"

    Me: "No. Not yet."

    Boy: "Why doesn't she talk?"

    Me: "Well.....her muscles that help her speak aren't strong enough yet for her to talk."

    Boy: (he watches Amelia for a moment thoughtfully, then with a proud nod says) "You should give her broccoli."

    Me & my husband: "Wow! That is such a good idea! We'll have to try that"

    Boy: (now beaming with pride) "Yeah. I have a baby sister and she doesn't talk yet either."

    I saw that little boy about a month later. He walked right up to Amelia and I and asked "Have you given her broccoli yet?" I smiled and said "well, we're trying". He smiled at us, said goodbye and ran off to play.

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  16. Um, thanks a lot, Debbie. Now I am sitting here at work and crying at my keyboard. LOVE that broccoli story and your point about encouraging people to talk with your child.

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  17. I think I fall into the same boat with others who look at intent more than words. If there is a snarl in the question "What's wrong with him?" I have a less open heart, but I must admit, anyone who steps outside of themselves and gives a damn about someone else on the planet.. I want to encourage, so I will almost always share instead of bark.
    We have taught our NT daughter that we do not stare or point. We smile or wave, or focus on something else, and framed it by acknowledging that many people will stare at her brother, some of them unkindly. She has disarmed several adults by saying quite loudly, "That grown up is staring. He's not supposed to stare."

    Life is hard enough without me being angry about a stranger's inability to ask me something the right way. So whatever you want to ask my family, I am happy to explain or share, just have good intent and an earnest smile--then if you use the "wrong" words I will still be grateful that you care.

    (of course I still reserve the right to post about that awkward interaction later...)

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  18. Like most of you, I hate, "what's wrong with her?" I'm so tempted, but don't, to answer, "not as much as is wrong with you."

    This is something I am really going to have to think about. I write about our lives as a family including the impact 12's ASD and challenging behaviour has yet I am loath to talk about it.

    The short answer is, I hate to be asked. I don't feel obliged to help educate someone when I'm out with my kids. I don't feel, "I stare because I'm interested and I ask questions because I want to know" is really on, not all the time.

    There are plenty of ways someone can become educated without pouncing on strangers and asking them personal questions.

    As I said, this is something I am going to have to think about, perhaps I should be more prepared and willing to answer questions. Have some stock responses prepared.

    Thank you, once again, for making me think.

    Lynn

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  19. Yea, def do not like "what's wrong with him". I still carry Dax through stores most of the time bc he's just 2. Since he still doesn't have the best head control he lays on my shoulder. Most of the time I get "oh you have a sleepy one" or "is he/she sick" (due to his hair he gets called a girl a lot!) More times than none my answer is just to smile and say yea, but like you I do have those days and I'm just like no he has cerebral palsy and can't hold his head up. I remember one time saying he's just being lazy (joking), but you should have seen the looks I got with that!! The other day I had him in his chair and a little girl came up and said she liked "her" shorts, I smiled said thank you and then she asked a few more ?s then asked "what happened to him?". She was probably about 7 but I thought that was super sweet! I felt bad when she seemed confuse when I said cerebral palsy, but she just smiled and went on her way! Children are awesome with acceptance!

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  20. I havent read through all the comments so I may be posting something that someone else has mentioned but the COOLEST way I have ever been asked about my daughter who has CP was from another dad of a special needs child and he came up to me at a restaurant and said "what makes your daughter special" and honestly I felt like this was the most respectable way to ever ask someone about your child.

    Because he didnt say what is your child special needs, he said it with a twist that made me think "yup, she is very special". I would never walk up to someone and ask the question but when I have caught myself in this situation I typically say "what makes your child special".

    For kids who ask "what is wrong with her" I respond "there is nothing wrong with her but here is how she is different then you" and that helps show my daughter's peers that the only difference is they are walking!

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  21. Had to respond again after seeing Debbie's post. Awesome! Kids are such curious little creatures - if they want to make sense of something in the world, they will. And isn't is something special to behold?

    Debbie - loved the anecdote!

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  22. WOW.
    I'm loving this conversation Ellen.
    I'm wondering if there's a cultural element to some of the comments.
    Here in the UK we don't get asked that often other than from people who know us well. We also don't suffer from staring as much as folk in the US do.
    I agree strongly with the idea of a person's intent rather than the phrasing of the question. WRONG is a bad way to say it but maybe it's the first thing that comes to mind. With thought they could come up with a kinder way of asking but maybe not. Maybe their fear of offending would mean they they never ask and never learn.
    Personally, I like to share about Ashley especially the positive aspect he has on us all. The whole family benefit from who he is so "wrong" doesn't really cover it.
    Again, Brits seem to be a little more coy about asking.

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  23. well if I am asked "what's wrong with him?" by a child I usually just reword it to say "well nothing is wrong with him. He has cerebral palsy and that's why he's in his wheelchair, isn't his chair cool?" but an adult who is rude about it I find myself getting defensive and maybe a little smug

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  24. Like you, Ellen, I've found that talking to other SN parents tends to be completely different from talking to parents of "typical" kids when it comes to Monkey's diagnosis. I'm going to share my feelings about talking to parents who do not have a child with special needs.
    As I've said, I don't accept the W - word at all. Period. It's not about my feelings, but about Monkey's. I said previously that I know firsthand how much it hurts my son when people ask what's wrong with him and act as though he can't hear them. I won't make a huge scene, squawking and flinging dung, if someone asks what's wrong when Monkey is standing right there. I instead tell the person politely but firmly that nothing is "wrong" with him, and end the conversation there.
    I'm completely up for raising awareness, and I'm happy to answer questions - after the person has gotten to know Monkey a bit. I really appreciate it when people take at least a few minutes to get to know my son before asking about his disability. "Hey buddy, I like your hat! Did you catch that baseball game last night? Who's your favorite player?" A little conversation along those lines lets us know that the person is acknowledging Monkey as a whole person and not just as a walking (no pun intended) diagnosis. After that, if our new friend inquires as to why Monkey is wearing a brace or walking with a limp, we're often game to answer.
    Another tip: Speak directly to my child! It's OK to ask him if he picked out the pattern on his brace, if he likes going to PT, or even what his CP - affected muscles feel like in comparison to his unaffected muscles. He's a bright little guy and a great advocate for himself. If you are matter - of - fact with your questions and don't make your entire interaction with him revolve around his disability, he'll usually be happy to chat with you.
    As a side note, I do understand that it's sometimes intimidating for people without a child with special needs to figure how to do the "right" thing. Before I had Monkey, I knew a family who had a teenager who was nonverbal and non - ambulatory. I used to think of how utterly blissful it must be for them to get to keep their baby as their baby forever. It never occurred to me that although they loved their son, caring for him was sometimes very difficult. Boy, did I miss the mark with that one!

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  25. I love this topic that you're doing right now because it my passion, and i want to talk about it but there is nobody to talk about it with. I think that it's really rude to ask, "what's wrong with her?" esecially if it's an adult, it bugs me, it's different if it's a kid. I wish people would just ask, "I was wondering what kind of disability you have?" Then it's a little more acceptable. You need to get to know the person first and not just see the wheelchair, or their disability. Yesterday when i was reading one of your comments someone said, is it polite for other people to stare? I do it myself because i am curious to see how they do things, i don't do it to be rude, but i just can't help it. It might not be acceptable, but i can't say don't do it because i do it too :)

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  26. My advice to anyone that is curious about a child with special needs is to introduce yourself first, then ask something simple like "would you mind if I asked you about your child's diagnosis?" It gives the parent the opportunity to refuse politely (we are not always up for 20 questions) or tell as little or as much of their child's story they would like to reveal to a complete stranger.

    My daughter, Maddy is two and has been wearing the cutest pink glasses I have ever seen (impartial momma here) since she was 9 months old. We have gotten all kinds of stares and not-so-behind our back comments and questions asked to us, but my favorite was a couple months ago when I was standing in line to check out at the grocery store. There was a group of 3 high school aged girls standing in front of us checking out. They were talking about the cover of a magazine that had one of the "Teen Mom" stars and her family on the front. The little girl in the picture was wearing the exact same glasses as Maddy. The teens were going on and on about how cute she was and then one of them said "I wonder what is wrong with her?" The clerk at the counter must have heard that comment and seen Maddy at the same time and asked the girls to shhh and motioned toward us. One of the girls asked me if her glasses were real? I let it slide since she was young and probably embarrassed and I took this as an opportunity to educate. I told them that there is probably nothing wrong with the little girl on the magazine cover, and introduced them to Maddy. I explained that she wears glasses because she is extremely farsighted and went on to say how amazing it is that a doctor can determine a child that young even needs glasses. They were genuinely interested in what I was saying and high-fived Maddy when I told them about how we saw her first intentional smile the minute she put her first pair of glasses on. Maddy did a good job looking cute and showing off her specs and making new friends while I went on to explain her rare chromosome deletion to the girls and the clerk. The girls walked out to my car with me and continued to play with Maddy while I put the groceries in the trunk. I thanked them for meeting us, something that I have since started doing when others approach us in a non-weird way and ask about Maddy. Hopefully, the girls we met that day learned something, if not about chromosomes and fashionable eye wear for children, about how to treat everyone with respect and kindness.

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  27. There are certainly ways to ask that are better than others. It's pretty obvious if you spend any time at all with my son Max that he isn't 'typical'. A lot of people ask me if he is on the spectrum amd that's fine with me. The word 'wrong' sets my teeth on edge, plus I have never had anyone ask me "What's wrong with him" who didn't say it in a very negative tone of voice.

    On the other hand, some of my favorite interactions involved people who were kind and extra patient with him, but didn't question me on a diagnosis.

    My least favorite interactions involve people who go on and on about how patient and wounderful I must be and how hard it must be right in front of Max. He doesn't talk much but he can understand more than most people realize. He doesn't need to be treated like a burden.

    I understand the idea behind teachable moments but I'm just not always up for it. :-/

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  28. I truly find that most people are kind and are just curious. I tend to ignore people when we are out in public because I am so focused on my T-man and his brother JD. But I have to say, many people come up to me and tell me their stories of their kids, or uncles or grandchildren or their neighbors that are a lot like T-man. And that always makes me feel less alone and makes me even prouder of my son. I love talking about my kids, so if someone is curious, ask!
    Kristen

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  29. I JUST did a post on this subject because of an encounter we had with a lady last week -

    http://momentswithmoriah.blogspot.com/2011/06/whats-wrong-with-her_02.html

    the lady asked me what was wrong with my daughter. i found the term "wrong" offensive, and would never want my daughter to feel like something is "wrong" with her. i don't mind if people ask "what's your daughter's diagnosis?" "why is she on a ventilator" "why is she in a wheelchair?" etc. just don't ask me what is WRONG with her...

    i also try to remember that no one is perfect, and that we all mess up with our words. but i expect adults to be respectful, and i don't know how people can just go up to a stranger and ask "what's wrong with you?" it's hurtful =(

    thanks for writing about this subject, ellen...

    xo,
    victoria

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  30. Um...I have a tendency to stare- at every one- I am an equal-opportunity stare-er. I never realized it until my kids would whisper MOM!....so now I am aware that I stare I make an effort not to...at any one. And my son Zach has adhd-so no one really asked what was wrong with him- it was more like-what's HIS problem anyway?
    but I was at a picnic this weekend- and there was a little girl-about 5-in an electric wheelchair. The terrain was rough, so the adult was pulling the chair along as the kid flopped from side to side- the adult wasn't paying attention at all...when I saw the girl again, she was slung on the hip of the same adult-the poor kid never had a chance to 'wander' or anything- and the adult wasn't engaging her- she just kinda hung there...
    not my kid-I have no insight into her physical issues, but I was annoyed/sad that she wasn't engaged with anyone the same way I used to annoyed/sad when my child wasn't allowed(school mostly) to engage when he was little.

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  31. Ellen, I posted on this myself a while back.

    http://www.eichefam.net/?p=2727

    In my own opinion, we parents of special needs (or special powers! :) kids need two things: patience and a willingness to educate.

    People can be harsh, perhaps even mean - sometimes meaning to be, sometimes not - but if WE don't tell people about our kids, who will?

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  32. I like it when people say to me..."May I ask what her diagnosis is?" or "Do you mind if I ask...?" They are being very respectful but are also showing that they are curious and want to know. It feels so nice to be asked that way, instead of someone just blurting out "What is wrong with her?".

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  33. You know, not much bothers me. Anyone can ask me anything they want - in any manner they want. For me, it's all about the spin. I can put a positive spin on just about anything. I gloss over the "what's wrong with him" and BLOW them away with amazing stories of how far Gavin has come...how his hearing was miraculously restored (for real - it was!) and how he has made me realize that people take lots of things for granted. I'm not going to change people - and I want my children to understand they they will encounter people who will say really dumb shit. I want to teach Gavin and Brian that the things people say to them or about them are NOT a reflection on them...and that they are responsible only for their reaction and response. I want them to always focus on the positive. Because there's WAY more positives than people realize!!

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  34. Reading these comments make me feel like I'm maybe actually doing this right. You are ALL saying to do what I do anyways. And while I may not usually have the guts (or think it appropriate) to inquire about the diagnosis (bottom line, I'm their cashier, not a friend... usually) I love to interact with these kids. Because really, they are ALL so special (and not in that special needs sort of way) and flirting/playing with them makes my day.

    Also, since a few of you have made reference to very young ones with glasses, I'll admit: that is my true soft spot. I have a thing for kids in glasses. They are just so damn cute! Though it helps that one of my own kids has glasses.(Though he was 6 when he got them so not overly young.)

    Also, what I've noticed with time is that kids with disabilities have the BEST smiles! You can see their whole soul in it.

    I am very grateful that my kids are healthy, but honestly, when my husband asked me how I'd feel if we discovered our current baby I'm 27 weeks pregnant with had DS when they do that testing at like 12 weeks, my response was to "bring it on". Yes, it would make things more challenging for us and her, but she's be ten million times more sweet to make up for it. They do that test early so parents have time to abort, but for me it would have just been time to plan and look forward to that extra sweet smile. (Seriously, have you guys seen Nella on this blog? http://www.kellehampton.com/ Total doll! And she's the rule, not the exception!)

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  35. I can either choose to be offended or I can interact with the other person.

    I get to meet lots of moms, dads, & grandparents at horsemanship and the pediatric OT/PT/Speech center. In those types of settings us parents tend to ask about the therapy being done, what the child is working on (e.g. my child is getting eating therapy with lots of sensory OT so he is calm enough, or at horsemanship he is getting speech/language). When you see the same parents in a small, semi-private setting, it then easily works into "what is your child's story"

    In general public, I don't mind the "what is wrong" type questions, or the "is he autistic" (even though I hate the wording) because there is interest. Most people want to know how to interact, make something easier, etc. for all kids like Luke. For over 12 years I have had the same kind of "stupid" questions about my kids birth/adoption.

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  36. Hello,
    I have been reading your blog for a couple weeks and this sparked the "I understand" or "How do you do it" comments that I got when my son was smaller. He was born with a serious heart defect and spent 3 years in the hospital. His social interaction is still not great but better, he will be 18 in 2 weeks.
    He also suffered a series of strokes during one of his many open heart surgeries which impaired his left side. He has learned to cope but he was predominantly left handed and had to re-learn everything using his right hand.
    I honestly never really noticed the "what's wrong with your son" comments as much as the "I understand" to which I generally ask if their child has a special need of some kind. Only the parent of a super special child can truly understand.
    The other comment "how do you cope and why would you have more children" because I have no choice and because I wanted to. this comment often makes me wonder if they think that I should have given up on him and therefore myself it still boggles my mind.
    Good luck to all with special children we were given them because we have the strength to help them become adults and raise awareness of the differences in everyone.

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  37. Hi there I have been a lurker but have never left a comment. But some how I felt compelled to do so today. My son has Aspergers- high functioning autism. He is in a regular class and many a times you might never even realize there is something special about him. Sometimes the fact that he has a non visible disability is even harder though. I get stares and tisk tisked comments under their breath about how I cannot control my child, or isn't he too old (he is 10) to be having a meltdown. They don't come out and ask, "What's wrong with him". It is more "what's wrong with me" for not being able to control him. This can be even more frustrating. I am constantly telling strangers about him, not as a way of making excuses for Jay, for I need not do that, but to let them know that just because you don't see something... doesn't mean something isn't there. The thing that drives me the most mad is the comment I get all the time. "Wow, he doesn't look like he has autism!" What does that mean? Autism comes in so many different forms but so many people don't know this. I try to just smile when they say this, and then reply and tell them about Aspergers... but deep down it just burns me. I wish people would just try to be more patient when they are out in public and see a child have problems. You never know what is going on there. Your judging the situation doesn't help. Either move along and ignore us, or smile and ask if I need a hand... but don't judge me. And when you are kind enough to stick around and help me pick up the stuff my son inadvertently knocked to the ground during a fit, and when I tell you thank you and explain to you what just happened... Please just smile and do not feel the need to add, "WOW... he doesn't look like he has autism." Because it doesn't make me feel any better, even if that is what you are trying to do. Autism is something my son has, in the way he has brown hair or hazel eyes. It doesn't define him. It may explain his actions sometimes but it isn't who he is. I hope this did not come across harshly because I did not mean for it to. I just wanted to give my two cents worth. Thanks!

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  38. A Good example of how to ask : A few months back I took the kids to a local park on a Saturday afternoon. There were a few other kids already there with their parents. We had been there about 15 minutes when one of the other Moms walked up to me and said 'I don't mean to be rude and if I am just tell me to go away, but is your son Autstic?' I just kind of laughed and told her 'Nope, he has long list of diagnosis but that's not one of them.' She then went on to explain that her nephew had just been diagnosed with aspergers and she was trying to learn more without just getting the 'cold hard facts from the internet' We ended up talking for almost an hour.

    A Good example of how NOT to ask: My daughter was working up to an epic meltdown while at Walmart. A woman walked up to us, leaned down almost in my daughter's face, looked up at me, gave a dramatic sigh and said in a high pitch baby voice 'Aww...Does she have Autisim?' I responded by leaning down to the woman and in a super sugary voice saying 'No, she's 5 and having a tantrum.' before picking my daughter up and walking away.

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  39. I am a young adult with Asperger's Syndrome. I was once asked if I was "mental" by a group of fifth graders in a park. I took the oppertunity to educate these children on Asperger's Syndrome and Non-verbal Learning Disabilities. If a teenager of adult used those terms, I would assume they were deliberately being rude and ignore them. However, if someone asks me politely, I am always willing to explain and educate.

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  40. Sharon from Mama's Turn Now, what "relief" (for lack of a better word) I felt reading your comment. I am in a very similar boat. My children too have "invisible" disabilities (well, it is *very* visible when it comes to behavior, but as you note, most people just figure they are bad, spoiled kids). The looks and comments I get are infuriating. Happened twice this week- at the dentist and at the movie theater. Had to leave with screaming kids both times. It is so unbearably isolating and difficult and it happens a LOT. Going to check your blog now.

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  41. From someone who doesn't have children at all, and rarely (but on occasion) gets to interact with special needs kids (and adults), I want to thank you all for this information and input. I haven't used the "R-word" in several decades (my parents made me look it up in the dictionary when I was quite young - even back then this particular definition was listed as disparaging). There are lots of times I really am curious about interacting - particularly if a child doesn't respond - I definitely don't want to offend or hurt, and am never sure how to ask what is appropriate. These comments are truly helpful. Thank you.

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  42. What a great blog, thank you! My experience is a bit different than many of yours, so I wanted to share another perspective. My son has an anxiety disorder. I have had to get accustomed to being looked at with judgment or questioned about what's wrong with him when he has a freak-out. Lectured about setting limits and not letting him get away with "that!" And, yes, asked many times, "what's wrong with him?" My feeling, is that we all need to walk around assuming that everyone is doing their best with their kids. That as curious as we might be, we shouldn't ask people we don't know (with out a good reason and intro) about themselves or their kids. I'm always curious what ethnicity folks are, I don't go asking strangers! Either take the time to get to know people, those who are typical or not, or keep quiet.

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  43. Kids often say, Why do you walk with those things on your legs? Why arent you in gym with us? Why do you leave classes early? I like the specific questions better than the whats wrong ones.My least favorite is,"Aww baby,what happened to your legs?You poor thing.How can you walk?Come here.Heres a lollipop."That was the cashier at Walmart. 13 year old boys do not like being awwed at and being called babies and poor things.

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  44. Like Creative Smudges, I get a lot of curious older children asking me what is wrong with Abby. I dont mind at all and I take the chance to educate them about my daughter. The "how do you do it question" is annoying, really annoying. My response is "I'm a mama that is what I do".

    Sharon adults tell me "well she doesnt look like she has CP". What the hell is that supposed to mean anyway? Abby turned 1 in July so I havent had too many stares or rude silly comments. I'm sure they will come as Abby gets older though.

    Eric adults say the weirdest things. One day I brought my daughter to the beauty salon I work at, she was 11 months old then. My boss watched my daughter while I worked. At lunchtime while I was changing my daughter's diaper, the receptionist kept staring at her.

    Finally I snapped" Stop staring at her". She was shocked and turned away mumbling" I was not" under her breath.

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Thanks for sharing!