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15 Things To Never Say To A Special Needs Parent

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As a special needs parent, it seems that people have a desire to comment to me, about my children, my parenting, my spiritual beliefs, my life choices and my future plans.  Friends, acquaintances, family members and complete strangers are remarkably comfortable questioning and commenting on various aspects of our lives.

I work hard to maintain my belief that the world is basically good and that most of the people in it are good as well.  To this end, I really want to believe that most of these comments, no matter how inappropriate, hurtful or insulting they may be, come from a place of good intentions that have gone awry.

I hope, I believe, I want so much for this to be true, because if this is true, then my belief in the goodness of the world might be true as well. And so, I write this list in the hopes that it will be read by some of those good people who mean well but whose words can still be as sharp as knives.

All of the following examples of things not to say, come from things that have actually been said to myself or other special needs parents.  Thank you to my friends who shared your stories to help me with this article.

1) “She looks so normal” or “I didn’t know anything was wrong with him.”

There are many variations of this one, but I have always found these versions to be the most offensive.  First off, what is normal anyway?  I can handle typical, age appropriate, even average, but not being “normal” implies what? That she is in fact abnormal, weird, bizarre?  As for option two, there is nothing “wrong” with him. While he may have physical, mental and/or medical challenges that most children don’t have, that doesn’t mean he is wrong in anyway.  He is exactly who he is supposed to be and there is nothing wrong with that.

2) “He looks fine to me” or “you would never know to look at her.”

If someone tells you that their child has any type of disability or challenge,  the correct response is never to downplay this child’s challenges by suggesting that they don’t really exist or at least that they are not apparent to you. This comment was a big hot button issue for many parents when I asked around about things not to say.  I guess this seems like it will somehow be a comforting thing to say, but in fact, it’s just the opposite.  First, please realize the amount of effort that has gotten the child to this place where they “look fine” to you. No, it didn’t happen overnight.  In fact, for many, it was hours of therapy, over the course of many years, not just having therapists see your child in your home  and taking your child to therapy appointments but actually becoming a therapist yourself, living, breathing, dreaming about how to make everyday activities therapeutic for your child.  All of this is lost in these comments.  Furthermore, these comments bring the child’s current challenges into question.  If I am telling you about my child’s diagnosis, it’s probably for a reason, so to tell me he “looks fine” basically shuts down the conversation and makes me feel discredited.

3) “Is it genetic.”

It is definitely not ok to ask this unless you are a family member and even then you might want to tread lightly.  As the parent where a genetic nightmare resided that I was completely unaware of before having children, I can tell you that this question is a time bomb. While I don’t like to think about the fact that my genes are the reason my son has had to have two brain surgeries and has cerebral palsy, the fact is, it’s true.  Please don’t drudge up this negativity by asking me about genetics.  For other people for whom the disability does not have a genetic cause, the undertone of this question is that you are wondering if they are somehow to blame for causing the child’s challenges.

4) “He’s going to grow out of it, right?”

No, people don’t grow out of cerebral palsy or autism or any other disability.  They don’t grow out of PKU or hemophilia either. Of course we expect and hope and pray for continued progress, but also with the knowledge that these difficulties are life long.  That is the end of today’s common sense service announcement.

5) “Did you cause her to be in a wheelchair?”

What would possess a person to ask this of a parent?  Seriously, hard to even imagine the good place that went awry with a question like this.  Don’t ask a parent if they caused their child’s disability, most likely they did not.  If they did, it was probably in a horrible accident and I suspect they would prefer not to discuss it.

6) “My uncle’s brother’s nephew’s cousin has autism, so I know what it’s like” or “My nephews cousin has autism too. He’s really good at math. What’s your son gifted in?”

Don’t for a moment believe that you know my experiences or the experiences of any other special needs family no matter who you know. First, just like any other child, my child is unique.  Would you presume to understand all there is to know about a child you just met simply by knowing their age and gender?  If you’ve met one child with autism, you have met one child with autism.  If you are interested in what it’s like to live in my shoes, ask me, in a kind and respectful way, at an appropriate time, I assure you, you will not know otherwise.

7) “Why didn’t you stop having kids after the first one?”

Wow, seriously?  How incredibly rude is this question?  But since you asked, let me tell you a story. We always wanted at least two children.  When my son became ill and we realized that his condition was genetic we decided that it would be unwise to have another child who could potentially have the same condition.  However, having another child was important to us for so many reasons, including easing a bit of my anxiety about leaving our son alone in the world one day.  But since it wasn’t meant to be, we let go of this dreamed-about baby, for the sake of his or her own potential health.  And we were sad and we mourned but we moved on.  And then, despite our plans and intentions, we discovered we were having another baby anyway.  And we were excited, and scared and worried, and thrilled! This is my answer to why we didn’t stop having kids, it’s messy and full of sorrow and joy, and it’s far from simple.  This is not a chat I want to have in the checkout line at the grocery store, so don’t ask.

8) “God only gives you what you can handle.”

This one was another hot button issue for many parents.  What if I can’t handle it, what if I’m trying to tell you that I need help, what if I’m falling apart, that I know that something has to give because I’m just not keeping it together anymore?  And what if before I’m able to share my grief and anguish with you, you tell me that God didn’t give me more than I can handle.  But he did, and I know that I have more than I can handle, and I am trying to reach out for help.  This comment just squarely shut me down.  Remember, if it takes a village to raise a typical child, it takes a large city to raise a special needs child. Whatever your thoughts are on God, I don’t believe he intended me to have to handle all this tough stuff on my own.  Furthermore, I have a hard time believing that God chose me and said, “hey, she can handle a whole lot of hard stuff, so I think I will give her a whole lot of extra stuff to deal with, and in the process, I’ll cause her son to have terrible pain, lots of medical problems and a physical disability.”  I can’t at all claim to know how children are chosen to have extra challenges, but I don’t think you can either.  I prefer to believe that God helps me handle whatever challenges are in my path to handle.  We all believe what works for us, please don’t try to push your beliefs on me.

9) “Have you tried juicing?” or “Why don’t you watch this movie about the kito diet?”

These sorts of comments are so incredibly unhelpful. The implication, is that somehow, you know more than the team of highly trained medical specialists treating my child. While I am all for natural interventions, I also realize that we are very lucky to have modern medicine and I intend to work with my child’s medical professionals to responsibly combine natural and modern medical treatments to give him the best of what both can offer. The other issue here is that there is an implication that juicing or removing red dyes, or a gluten and casein free diet, or cranial sacral therapy etc. will somehow be a cure all.  Now don’t get me wrong, I am willing to try almost anything that might help my child, and I know many families who swear that they have seen improvement with these sorts of techniques, and who am I to say otherwise?  However, please don’t suggest that any of these are going to cure my child.  Because I will argue that if you know someone whose permanent disability was cured with juicing, they probably didn’t have it in the first place!

10) Comments on work, such as: “it must be nice coming late” after running around all morning at appointments or “it must be nice getting to relax all day since you don’t have a job.”

Taking care of children with special needs is hard work, period. Whether a parent works outside of the home or not, assume they have a full time job (and by that I mean 24 hours a day, 7 days a week).

11) “He’s one of Gods special angels.”

Photo Credit: Joan Wheeler

You can’t jump like that with a broken leg folks!

Seriously? Yuck! If I thought this was something you said about all children I guess I could stomach it but reserving it for kids with special needs is just patronizing.

12) “How in the world did you break both your legs?”

Orthotics aren’t familiar to most people who don’t know someone who uses them.  So just know this, they are not casts and they are not typically used in the treatment of broken bones.  When people see a child in an orthotic, they often ask if they broke a bone or assume they had an injury.  It’s very confusing to a small child who did not break their legs or injure themselves to be asked all the time how they got hurt.  Unless you see a cast, assume it’s not a broken bone.  For that matter, many of our kids wear casts during stretching regimes for weeks at a time or for constraint therapy to encourage them to use a weaker hand by constraining a stronger one.  So I guess it’s never safe to assume.

13) “I don’t know how you do it. You are a great mom” or “Do you really start his IVs, oh dear, I just couldn’t possibly do that!”

We all do the best we can with the situations we are faced with in life.  Trust me, I never dreamed that I would be able to pop an IV in seconds flat.  I never expected to know about orthotics or to have a good relationship with our pharmacist who knows me by name, or to know what a physiatrist is, or how they categorize athletes in the Paralympics.  The term adaptive sports meant nothing to me 10 years ago and now it’s a huge focus of our lives.  You love your kids and they need special care so you give it to them, period.  Don’t presume that caring for my child makes me super mom. Tell me I’m a great mom because I laid down the law and set my kids straight when they were acting up. Or because I managed to sneak vegetables into mac and cheese and no one noticed. Taking care of my kids doesn’t make me a great mom, it just makes me a mom, that’s what we do.

14) “I can’t believe you give her (insert medicine or medical procedure here), I would never give that to my child.”

Well thank God your child doesn’t have the medical need for it for goodness sake because if they did I’m sure you would stand by your laurels and not give them the lifesaving treatment they need. Seriously people, think before  you open your mouths. I hear this most often relating to seizure medicine, don’t get me wrong, I hate the seizure meds and the toll it has taken on my child’s brain.  However, I know that the permanent damage to his brain they are saving him from is absolutely worth it.  Yes, I will take the slowed cognitive efficiency, in favor of protecting his brain.  Furthermore, this difficult and complex decision rests with my husband and myself and the team of highly skilled specialists that treat our child.  We have this under control, so feel free to donate your two cents elsewhere on this matter.

15) “I nearly had a stroke” or “I think I’m going to have an epileptic fit” or “Are you retarded?”

We can be a bit sensitive about these sorts of things.  The “R” word is a real issue for me.  It’s just so offensive and outdated.  To hear grown adults using it is shameful.  It was offensive to say in high school, but we didn’t know or understand, or maybe we just didn’t care.  However, everyone should know and understand now, so the message you’re sending if you’re still using it, is that you don’t care.

Comments such as “I nearly had a stroke” can be really offensive to a parent whose child did in fact have a stroke.  Just be conscious of your audience and think before you speak, truly that’s good advice for any occasion.

Now you know, 15 things not to say to a special needs parent.  Keep an eye out for an upcoming sequel where I will delve into some alternative options to the comments above.  Feel free to share your ideas for that article in the comments below.

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94 Comments


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About Dr. Darla Clayton

Answering to Mom, Mama and Mommy, Dr. Darla is a Coach and psychologist as well. She earned a doctorate in clinical psychology from Indiana University of Pennsylvania. She is a wife and a mother to two fantastic children, a 9-year-old son who has cerebral palsy and a 5-year-old daughter. Inspired by her sons success competing in adaptive sports, and concerned by the lack of sport options available to him, she founded Strong as Steel Adaptive Sports in 2011. The team provides sport specific training and opportunities for children ages 5 to 21 with physical disabilities and visual impairments.


94 Responses

  1. [...] SEE ALSO: 15 Things To Never Say To A Special Needs Parent [...]

    • I am a special needs person. i am not as cynical as some people about these kind of comments. I know that each person that approaches me is trying to say, I am proud of you for all that you are sacrificing. But they just don’t know how exactly to word it. Even I get it wrong sometimes when I approach someone. What keeps coming to my mind each time is all the people that constantly complain about what people shouldn’t say and how mean it is and how they can’t figure out that you are having a bad day, ;like everyone is a mind reader or are expected to be. If you are having a tough time then tell the person that. Sometimes they are waiting to be asked for help but don’t want to interfere. Guess what I am sick of hearing?! All the things people think that people say wrong. I would rather someone approach me and at least try then just stare and pity me or leave a nasty note on ly wind shield wiper for parking in a handi cap parking spot when I don’t look handi capped, that day, after I have forgotten to put the sign up or it has blown onto the floor or the passenger seat. But no matter who or how people approach me I always smlle and enjoy a conversation instead of an avoidence. Which a lot of people do so the things they say wont get printed on every sour persons list of what NOT to say. Go ahead and speak to me. If you dont get it perfect i don’t mind. Just knowing that you care is enough to get me through the next hour of the day.

  2. avatar Emily says:

    Do people really say these kinds of things to people? Without thinking they’re going to get slapped?

      • avatar Judi Shukites says:

        I’ll never forget, when my now 25 yr old son was first diagnosed with autism at about age 3, at church a little elderly lady came to me while he was sitting on my lap and said “He is such a beautiful little boy…you would never know just by looking at him that he is retarded!” I always tried to use those opportunities to educate people a little, but it got very disheartening and frustrating sometimes!

    • avatar Kevin H. says:

      I’m a 36-year-old man high on the AS. I’m between savant and Aspie. My last IQ test, in 2009 or thereabouts, basically scored two points below Mensa eligibility. I astound people with my impressive computer affinity about how I can spin my own Linux distribution, run a computer *without* Windows on it but Linux only, and know my way around a Linux commandline. I also have other interests, which I decline to mention here. But it does irk me a LOT when some tells me “Oh! You were a special angel when you were younger, huh?”, or “I have a { [grand] son | daughter } who has autism…” or “Really? You don’t look like you’re autistic…” Really? I don’t “look” like I fit the criteria to qualify to “look autistic?” This blog has hit home. Thank you +1 * 1000.

  3. avatar Kirstie says:

    My “favorite” was: Well, I wouldn’t walk either if I could be carried around all the time!
    Oh, wow, really? You mean all I have to do is put her down and she will miraculously walk?? Duh – why didn’t I think of that??

  4. avatar Terri Trensey says:

    When my youngest started Head Start, I told them he had Duchenne Muscular Dystrophy. At the end of the year the comment on his report card was that he should practice walking up and down stairs. That would be like asking a child losing their sight to “practice reading”.

  5. avatar Terri Trensey says:

    My son’s started with used (borrowed) hospital wheelchairs. A comment was made “I wonder where they got the wheelchairs” but in a disapproving tone of voice that made me respond with ” maybe because they can’t walk?”

  6. avatar Sara Sable-Antry says:

    Fantastic article. I work in healthcare and am frequently in hospitals and physician offices where I wait in lobbies. I see moms, dads and families with their children who have various reasons to be in the same places. If you haven’t already, could you write another article that address the appropriate way to offer help in various situations; parking garages, restaurants, medical facilities, etc? Also, what are ways to help friends and family members that might just need a break? Many thanks for your consideration.

  7. avatar Bekki says:

    “Are you sure she isn’t just being lazy or avoiding ___?” Really, do you as an uninformed parent or teacher want to go there? CP sucks. Cognitive skills are affected (in my daughter at least), and her brain literally processes more slowly than typical kids. Believe me, she would love to read well and run like the other kids do and win a game in class and ride a bike and all the other stuff her friends do. But she can’t always get there and when she does, she’s busted her butt. And usually found an alternate method to do whatever it is she’s trying to do. Try giving her some credit instead of criticizing her.

    • Oh Bekki… that’s awful :( the last thing any child with CP that I have met is, is Lazy! These kids work so darn hard for the things that come naturally to most of the people in the world and they frequently get so little credit for it.

  8. avatar Jenny W says:

    Some of these things are outright horrific (e.g. “Did you cause your child to need a wheelchair”), some ignorant (use of the “R” word), and some are just curiosity, or a desire to comfort – and maybe we shouldn’t read so much into them, IMO. I’ve been asked the “Is it Genetic” question many times. Sometimes I really don’t feel like explaining the fact that yes, my daughter’s NF is a genetic mutation, or that genetic and inherited are not necessarily the same. Sometimes I question the asker’s motives; but usually that has to do with ME, and what I’m reading into the question, and not always the person asking. I don’t always feel like teaching people, and not everyone is good at listening, but some of these questions/statements do allow a chance for parents to inform people who may have never met a child like ours. Even if they are sometimes painful or frustrating to address, I’d prefer questions about my daughter’s genetic condition, statements that I’m a great mom, or that my daughter is an angel, and/or confessions that a person couldn’t imagine being able to g-tube feed/suction/give meds to their child (just as I could not have imagined doing any of those things 10 years ago) than stare at my child silently and/or make assumptions about her. However, I really, really appreciate the people who “get” it, and say positive things, without seeming to really notice my daughter’s obvious differences.

    • I agree Jenny, I would rather people ask. and honestly, “is it genetic” isn’t such a horrible question if it’s being asked from a place of genuine caring and concern, but sometimes it feels like it’s just curiosity for its own sake and I’m not a fan of airing my personal stuff because a stranger in Wal-Mart just wanted to know. I am big proponent for education though and will try to use these opportunities for educations sake even if I’m put off by the question or the manner in which it was asked.

  9. avatar Julie says:

    I’ve been asked twice if I married a family member…I kid you not. I’ve heard all of the above!

  10. avatar Rick says:

    I often encounter parents struggling (managing) to deal with their autistic kids in public. Some are people I know and some are strangers. Realizing that every situation is unique, is there anything that could be said to show support/understanding/solidarity in such a situation or is it better no to say anything?

    • avatar Justin says:

      I don’t know….my brother has severe cerebral palsy and my only complaints throughout our lives (in terms of how others treat him) is staring or shouting at him like he’s deaf.

      If someone says something ignorant, it’s a chance to educate so they don’t do it again. If they say some of the above things that people say in situations where they don’t know what to say, well, I don’t hold it against them. They’re at least trying to talk to you and not just pretend all is normal. All is not normal and that’s actually okay.

      Maybe it’s just me and my brother wanting to make others feel at ease…but I’d sure hate for someone to read this rather exhaustive list and decide they won’t ever say anything again.

      • Hi Justin, I agree, I think it’s all in the way it’s said and the tone of voice it’s said in. I’m writing a sequel that will talk about better ways to phrase similar questions or comments. I certainly don’t want to shut people out or make anyone feel like they can’t contribute or ask questions, it’s all in the way it’s done.

      • avatar Prue says:

        Thanks Justin. I must admit after reading this I began to feel that I am sure I have offended people at some time or another, and perhaps I should just stop talking to people with special needs kids that we meet out and about. (Though obviously some of these are awful & I would never imagine anyone saying or asking them).

        I confess that after chatting to a parent at a playground she told me of her sons diagnosis and I commented that I hadn’t realised, he seemed really happy & was doing really well, he seemed to be playing really well with the other kids and was able to use the equipment with minimal assistance.

        I always thought it would be better to focus on the positive than be negative and “oh you poor thing”. I don’t for a moment think that these parents don’t have times when they are really down, I also do have an inkling of the time and effort they put into helping their kids to achieve their best, and I never meant my comments to minimise their situation. I just wanted to connect with another person.

        I know how hard it has been for my sister when people just stare, or avoid eye contact because they don’t know what to say, I know she would much prefer they spoke to her and made the effort (perhaps even saying something really stupid), instead of being scared of offending.

        You are right, I don’t know what it is like to be the parent of a special needs child, but I do try to treat everyone I meet with respect.

        • Prue, honestly, most of us don’t take serious offense to the majority of these comments, we would just prefer that people choose slightly different words sometimes. For instance, instead of saying “he looks fine to me” maybe say, “wow, he’s doing so well, you guys must be working really hard”. Same sentiment, but will likely be better received. I’m working on another article that will suggest some other alternatives, stay tuned.

    • That’s a great question Rick, I think a kind and genuine smile and a simple “you’re a doing a great job Mom” (or Dad as the case may be) is usually appreciated.

  11. avatar Hilary says:

    I am only 16 months into this but #2, 4 and 8 are already toughies for me. 2 because of exactly what you said and because it makes me feel like I am lying or making a big deal out of nothing or something. 4 because I don’t know, I don’t think so but he is progressing so I don’t know what the future looks like and his condition is so rare that the doctors can’t tell me with any certainty. 8 because most days I have way more than I can handle but people are always telling me God thinks I can handle it and if I disagree than I am either questioning their belief or God’s ability to know what I can handle. But I have too much on my plate – in addition to my son (who looks normal to you so I am probably making it up, right?) and his twin sister that I struggle to make sure I spend enough time with since my son demands so much more, I have a slowly dying mother and a grandmother with dementia and I am their agent in fact for all legal and financial things and I am failing at that. Oh, and I have a full time job, a husband and a house that quite literally is a disaster area except for the kid areas – I keep those clean. Ugh!

  12. avatar Jen says:

    I’ve been asked, “Will he be able to have children of his own?” Really? Who cares! People do ask all kinds of questions that would be considered rude and intrusive if you asked the same question of a person without a disability. Most of the time I don’t mind sincere questions from people because it give me the opportunity to educate, but like another commenter said, sometimes I just am too tired to teach someone about our life.

  13. avatar Alex Yates says:

    My all time favourite was “whatever did you do that was so bad that God had to punish you ?” Love it.. Just one small criticism of the Article.. We have worked really hard to use People First Language.. My son is “A young man with a Disability” not a Disabled Man.. His disability shouldn’t define him any more than his Disability defines me.. I am the Parent of a young man with disabilities not a “Special Needs Parent” a small but life defining difference.

    • Oh dear Alex! That’s awful! You just have to shake your head sometimes…

      I’m so sorry I missed the people first language error in the article, I will track it down and correct it ASAP! That was a huge mistake on my part as I’m a big promoter of people first language so thanks for the heads up.

  14. I think when people say things like “I’d never know he/she was disabled.” or “He/she looks fine to me.” they are not denigrating your efforts or saying that you’re lying. They are trying in their ineffective way, to be comforting – to tell you how good your child looks. You could say “Thank you, we think he/she is beautiful/handsome, too.”

    • Hi Lauri, I agree that most people aren’t but I guess I feel like there is a better way to phrase it. I did have a mother look at me in a very condescending fashion and say quiet rudely that my son looks fine to her when I told her that he participates in adaptive sports and went to the National Junior Disability Championships. As if he somehow didn’t qualify for adaptive sports because his disability wasn’t apparent to this woman… I also think tone of voice makes a huge difference in I will respond to a comment or a question.

  15. avatar RobinSteele says:

    Great post! We have run into the same issues with our 12 year old with Holoprosencephaly (like CP). #8 and #11 have been the difficult ones for us. Obviously, people using the r-word is difficult. I have noticed two new words that are becoming negative: “Short Bus” and even “special”. They both can be used in very condescending ways.

  16. avatar Anna says:

    As an autistic person, I hate group projects because everyone wants to explain it to me when I know how to do it. Sometimes, I know I can do it individually and better than my group ever could, but they still “help.” I don’t know if it’s their way of “accepting” me, the mental ability stigma, or if they know I’m smart and this is a display of insecurity. Whatever it is, it needs to stop. To truly accept me, give me my independence. The mental ability stigma is archaic and inaccurate. You’ve seen me on the climbing wall and playing the flute and other autistic people do things like math and science. If I make you insecure, don’t be. I may be the best friend that’s been hiding in plain sight.

    • avatar Jenny W says:

      Anna – I hate group projects, too, and can only imagine how frustrating this must be. Clearly you don’t need people in your group to help you understand. And I can’t imagine that your peers don’t recognize that you are very intelligent. I can’t explain why people in your group behave the way they do. Perhaps it does make them feel better. I’m so glad that you know that how they behave reflects on them; not you.

    • That’s a great point Anna! Group projects are the worst but it sounds like they are extra tough for you, hopefully the other kids realize how awesome you are soon!

  17. avatar Jennifer says:

    I see so many posts like this . I think it would be much, much more helpful to have a post, 15 things to say to a special needs parent.

    Most people are well-intentioned, but sometimes silence can be the worst of all. How about some positive suggestions?

    • Jennifer, thanks for the input. That article is almost done. It will be basically take these things not to say and look at some alternative options that might be considered less offensive.

      • avatar Jill says:

        I would rather silence than these questions!!! I’ve had 6 years of intrusive questions so far. If you unlikely to be a part of someone’s life, please just don’t say anything, unless it is to offer some practical help for an obvious problem… The main issue to me is that 99% of these questions come from strangers in the queue, on the street, in the train. Not really your business to intrude into someone else’s life is it? I am much more tolerant when it is a regular cafe waiter, another child’s parent at play group or in a park, someone we see regularly (even if it is in a casual way) in the library. In these cases I am happy to chat, answer questions or provide my handy ‘information sheet’ I keep in my purse for strangers who have more questions than I want to answer in the hearing of my child…

  18. avatar Cat says:

    This was so helpful and well done. When I meet a special needs child, I treat them like any other child. And I don’t ask about their disability unless their parent starts the conversation. Also, I did relate just a little to the statement about, “have you tried…” My son has asthma, which I know does not mean I understand parenting a child with disability, but when he gets sick and struggles, I have well meaning people who send comments telling me all the things I should try. One person asked if I’d tried Vapor Rub. Really? For asthma? Asking for prayers does not mean I want your random, unsolicited advice. One person went as far as to say that I made my son get sick because he didn’t have on a big enough coat. Another parent wanted him taken out of preschool because he was “going to infect every other child.” Really? With his asthmatic cough? I certainly don’t know what it’s like to walk in your shoes, but I have wanted to punch someone in the face because they said something stupid.

  19. avatar elliott marks says:

    Yes I have heard most of these things over the last 28 years.
    However, I try and give these ‘casual observers’ a lot of room to be ignorant because they haven’t had a lifetime of experience with disability.
    What still gets me upset is when so called professionals make ridiculous statements. Once in an IEP meeting for a young girl who had previously been diagnosed with a learning disability, the school psychologist blurted out that. “we have found that the reason the student is having so much difficulty is that she’s mildly retarded”.
    How does a person deal with someone like that?

    • That would definitely be upsetting Elliott, I’m not sure what the “right” way to deal with this would be, but I would probably point out the error in word choice and request that the appropriate language be used moving forward.

  20. avatar Juliette says:

    Hands up to asking-Is it genetic- or a better way to ask do you know whats caused it. – but I am interested in what causes illnesses as opposed to apportioning blame. I have also been on the receiving end of number 13 both for having three boys (like it something special) and for dealing with an asthmatic child. Yes it is severe but really if I didn’t he wouldn’t be here.

    • Hi Juliette, I think asking “do the doctors know why…” is usually safe if your in the midst of a conversation. That way, if it is genetic most people will probably tell you, and this allows them the opportunity to choose not to mention it if they aren’t ready.

  21. avatar Shellie says:

    It sounds to me like this mom is just angry at the world and nobody should talk to her period. There’s 2 out if her list I agree with that are awkward questions. Why not take the time to educate people instead of taking offense? My child “is” different and I embrace it with pride.i love talking about her and her disability and I feel blessed to have her.

    • Hi Shellie, I wanted to let you know that I respond to these comments with kindness and education in the vast majority of the cases. That doesn’t mean that I wouldn’t prefer people choose their words a bit more wisely sometimes.

      • avatar Jill says:

        When I had just 1 child with a disability people seemed to think it was fine to approach me at any time with any question. Most people started with “What’s wrong with your child?” (as you say above) which in itself, while meant kindly, wears you down when you get it a dozen times a day. As she got older and understood more, it started to make me angry. How would you feel if someone asked intently “what’s wrong with you?” several times a day, every day. What is she meant to think and feel as she develops? I hated this one mainly because of the constant repetition, and my concern for the self esteem of my child, but I understood the pleasant intent.
        I hated “What’s the prognosis, then?” most. My child is standing right next to me. Her ears work just fine. I don’t even know your name, and you think this is an ok question? Really??? What if she has a terminal or progressive illness? Really?????
        It was fun to read this list for me. Despite not wanting to offend, people unleashing their curiosity on a total stranger (us!) is wearing. If I’m having a bad day, it can nearly break me (in the bank, the shops, the train, etc). This article was an amusing ‘recognition of shared experience’ read for me and I liked it! I have had most of these (our equipment is oxygen apparatus, so some of the mobility equipment questions differ).
        Once I had my twins (yes, I DID have another child!!!) I found people were less able to ask. Probably due to not being able to get my attention. I really loved getting intrusive questions about twins instead (“did you have IVF?” “thank you for asking, if you know anything about IVF then you may be aware that it is emotionally fraught, extremely stressful, and intensely personal. No we did not have IVF, we had SEX. Did you have any other questions, lady in Woolworths?” I didn’t actually say any of this of course ;-) ). It was a great relief to have these questions and I found myself enjoying each and every one!

  22. avatar Maurine says:

    Oh my I’ve heard most of these, and I found this list to be awesome. I kind of chuckled a little cause it was funny. I too believe most people just want to say something and can’t think of anything smart to say, or they are trying to find common ground in order to relate to my child. I take it as a good intention and an opportunity to educate. Or sometimes I just mess with them for fun. Gotta keep it light somehow.

  23. avatar susan says:

    I have two boys ages 20 and 22. They are not Retarted they are Mentally Challenged. This Word is awful and anytime i hear somone using it out of context i let them know and then tell them about my boys. You can imagine the apoligies. I also believe God gives. us more than we can handle by ourselves. I face more challenges daily since my boys have come into adulthood than i ever did before. I pray for strength and guidance daily.

  24. avatar Laura says:

    See and as an adult with cp I have problem with the Physical /mental challenge thing Not that I have a problem with others identifying that way.. Because for me my life is my life and challenges are… oh I don’t know something I choose to do. Not getting up working, going about my day. I believe there will be as many things that are annoying as there are people with different experiences. Since I works with kids with disabilities every day all day. My biggest pet peeve in the world is supposedly professional people who don’t understand that kids are kids first… no matter what disabilities or struggles they have Good article though! When I was a kid I’m in my 40′s now, I had casts from surgery on both legs. I was about 2 and some woman was staring at me as my dad was pushing the stroller. Because this is who my dad is , he said without missing a beat “and if you don’t learn to behave I’ll break both our arms too. HA of course now that would get you arrested most likely but it is my favorite story.

  25. avatar Brad says:

    this brought back memories and lots of laughter, I have Duchenne Muscular Dystrophy and I’m 37 now. My parents and myself got every comment in the book, very disheartening at the time but quite comical 20yrs later. Great article by the way

  26. avatar Sheri Houston says:

    Unfortunatly, we have to experience something to truly understand it! I understand how frustrating it is to have a child with a disability. Mine has autism and tourettes! But the truth is…..ignorance is a disability too! Most people really do mean well and are trying the best they can to be supportive!

  27. avatar Sheri Houston says:

    And believe it or not……people with children without disabilities also get unwant soliciated advice! Hehehe

  28. avatar Jo Ann Good says:

    This article gave good advice. I was appalled at some of the comments and questions. However, I was not surprised. I am a retired educator of special needs children. I started in 1972, when the field was relatively new. I loved my job, but found the general public and even some educators, could not agree with special need children being in public schools. I taught high school students my entire career. The word “retarded” was worse than any 4 letter word they could be called. Students shed tears at being called “R” word. I tried to protect them from hurtful words and actions by keeping my classroom open at lunch, their only free time. But even other educators did “not get it”. When I did my student teaching. a 2nd grade teacher encouraged me daily to not teach special needs children. Sometimes, my parents did not understand either. Because of mental limitations or their “culture”, they did not or would not help their children’ s cause. However, I also had parents who were diligent and informed. But in either case, my heart went out to these parents. Their job was 24/7. I was with their child 6-7 hrs. Whether they worked out of the home or were stay at home moms, they were always on duty. I do not know how people can be so callous. I do believe God gives us the strength to do what is needed and necessary. My oldest son committed suicide, at age 18, on his 1st day of college. I thought for sure, I would go crazy, lose my mind. It had to be God who gave me the strength to go on. I feel God gives special needs parents the strength to do what is needed, and more, with help. I would like to think our special needs children would help to make us a ” kinder. Gentler, society “, I feel I am wrong about that…..but I can still wish for that.

  29. avatar Mel says:

    Great reading and sooooo true. People have no idea. The other one I hate is ” it could be worse, look at such and such” . Call me selfish but just sometimes I feel like it couldn’t possibly get any worse, and I can’t see outside my own family. I don’t find the “it could be worse” quote consoling, it’s more insulting, like we don’t have anything to worry about, playing down our issues. Everyone and every child is different, not better or worse.

    • I agree, there are definitely days when I feel like it couldn’t be worse. When I really think about it, of course it could, but imagining how it could get worse isn’t on my list of fun ways to spend my time. Not a comment that makes me feel warm and fuzzy.

    • avatar Jill says:

      And anyone who spends any time in a children’s hospital knows it ‘could be worse’. In what way does seeing other children suffer make our lot better?!? I so agree with this comment. Sometimes is IS worse, it’s just that not all current issues are visible from the outside. Good addition Mel. :-)

  30. avatar Beverly Theil says:

    Also, please do not make the offer make to “pray for your child’s affliction so that God will heal him” (actually said to me about my son’s club foot). We chose to help God by taking our sons (yes, we had a second child; and yes he had clubfoot too) to an orthopaedic surgeon who tended very nicely to their “affliction”. Prayers by nosy, insensitive individuals were not needed.

    Great post. Thanks from someone who has been there; done that; have multiple T-shirts.

    • Hi Beverly… isn’t that the truth! God helps those who help themselves, and we would be remiss not to take advantage of the bounty of amazing doctors and therapists available to our children. At least that’s my thinking on the matter, you are of course entitled to your own :)

  31. avatar LeAnne Petrone says:

    This would be helpful if each had an alternative statement. I came to realize that people just wanted to help, especially as I tried to help others with what I had learned through my experiences with a 24 week micro-preemie that came home on oxygen, had reflux, three surgeries, etc.

    When she was first born, only one person’s comment seemed appropriate to me: “Congratulations and I’m so sorry for her struggles”. Either comment alone tore at my heart, but acknowledgement of both felt like they understood the mixed blessing of a live, but challenged baby.

  32. avatar Sarah says:

    I’m a mum of a 14 year old boy who is foremost happy and generous with his love and affection with those he trusts and secondly has a rare genetic condition which leaves him with profound learning difficulties. Probably the worst thing I have been asked over the last 14 years by strangers and those who know me and really should know better is, ‘can you bare to think of what the future holds?’ There are no words to respond to that – none that I’m prepared to type anyway!

  33. avatar Marguerite Hutchison-Rhodes says:

    Yep- # 2 was especially painful in the early years… Believe it or not- I got that not only from our preacher but our doctor too!

    • avatar anissa says:

      this article is so timely for me right now! My son recently started having seizures again after a year-long break. I cannot stand the sympathy comments that I get. But the worst one was when my mom said to me that you would just never know by looking at him that he isn’t normal. I wanted to reach through the phone and poke her eyes out. I have since come to an understanding that people are not looking for sympathy but rather empathy. Trying to use that in my own life as it relate to others in their times of trouble. Thank you for this great article!

  34. avatar Tom Vosicky says:

    I get the; “You would hardly notice anything was wrong with him.” a lot. It feels worse when children on the playground ask me, “What’s wrong with him?” or are just simply cruel to him because he is a little different than they are. Great article.

  35. avatar brad fisher says:

    Every time we walk out of the house I get hit with one or more of these. You forgot “I didn’t know know she could go outside” or because she lays down many people look at her and assume she is asleep. There is also another little girl in our town a year younger that some people have seen so right away they again assume my daughter is the other little girl. When this happens i just call the people making the comment the androgynous name Pat assuming all people that walk upright are called the same name. (father to a little girl, 8 years old, spinal muscular atrophy type 1). And what about people that park in disabled parking spots illegally?

  36. avatar Jessica says:

    my child is not autistic, but he is severely cognitively and physically delayed. At 18 years old, he has is comparable to a 9 month old, and is non mobile, in diapers, and needs to be spoon fed. I really do not find any of these comments offensive, except for the medication one. I think most people do not know what to say and if they say something that is hurtful it is not maliciously. Similar to when you do not know what to say to an infertile couple or someone who has a relation that has just passed, there situations where sometimes you do not know the right words to use so you stumble for words. With the exception of the rare person who is obviously rude or cruel, most of these comments if they hurt us are more about our sensitive areas not about the person saying the words.

  37. avatar Ryan says:

    I haven’t read through all the comments under your post, but I’m sure someone has heard this before;
    The other day I was asked
    “Have the doctors told you how long she (my daughter) will live?”

    Had to fight back a few tears, and answer that stupid question!
    Why would someone ask that question?

  38. avatar Rachel says:

    I thought that these were great and that most of them were totally applicable to adults with disabilities/chronic illness/etc. It’s amazing how bold some people are. The one that always makes me the most uncomfortable is the praise such as, “Oh, I could never do that, you’re such a strong person.” I always tell people that if they found themselves in a similar situation, I think they’d be surprised at their own strength.

  39. avatar Kaela says:

    I don’t have a special needs child, and I don’t think I know anyone with a special needs child either, so I can’t say I know what I would or would not like to hear people say to me. Having said that, some of these comments you talk about could just be genuine concern/question/ideas. I could see myself saying a few of these things to a special needs parent without any malice intended. Now obviously some are over the top such as asking if you did this to your child, but things like the juicing or ‘have you seen this movie’, or my uncles cousins brother has special needs… People may just be showing concern, or trying to relate to you, or tell you about some cool thing they saw where someone cured a disease with whatever unorthodox treatment. Comments like god only gives you what you can handle may be a way of trying to make you feel better, or complimenting you on being so strong. The comment about I nearly had a stroke, I think everyone is guilty of that, if they have ever related a personal problem to any medical condition at all. For example, being startled and saying ‘I almost pooped my pants’ or ‘I almost peed me pants’, I am sure that is offensive to the elderly or anyone else who actually does d those things and can’t help it. Or saying something embarrassing, and then saying ‘oh my gosh, I was so embarrassed I could have died’ could be offensive to people who are dying. I am just saying I think parts of this post went a little too far and reached a little too hard. The world isn’t as evil of a place as you seem to think it is, and a lot of times those things are probably said with good intentions, meant to be helpful, or someone just doesn’t know what to say so they try to make conversation. I know I am probably guilty of saying a few of these things, and I don’t feel bad about it or regret it, because my intentions were never bad.

  40. avatar Shelley says:

    I am a Speech Therapist and enjoyed this article very much! Even as a professional in this field I found #15 to be the most helpful reminder. Not for the use of the R word, but for the other descriptors we use to describe a reaction to something. I hadn’t ever thought about how “I almost had a stroke” could impact someone else. Thank you so much for making me more aware. I also have an interesting twist to this article–I know parents of a child with special needs who are the ones saying most of these things in the article and some that others are commenting. Talk about the need for educating!!! It’s very sad that as much as we want to educate others, some people think they have it all figured out, don’t need educating, or honestly just don’t care. Thank you again.

  41. [...] recently wrote an article about 15 things you should never say to a parent of a child who has special needs. While writing it, I had a hard time focusing on things not to say, and kept wanting to suggest [...]

  42. [...] recently wrote an article about 15 things you should never say to a parent of a child who has special needs. While writing it, I had a hard time focusing on things not to say, and kept wanting to suggest [...]

  43. avatar Keri says:

    Hi everyone, I don’t have a child with special needs, but I agree wholeheartedly with this article. I do have epilepsy, which thankfully has been controlled through medication for about 20 years, so I know the ridicule having a disability causes. I know how it holds you back and know how it drives you to push through the worst. I know how it makes people sympathize with you rather than truly wanting to get to know you and be your friend. People were afraid of me – even my dad’s parents were afraid to take me for weekend sleepovers because they didn’t know what to do if I had a seizure. A disability doesn’t, or shouldn’t, define who you are. Some people just don’t know when to keep their mouths shut and what a truly intelligent question about physical, mental and emotional disabilities is. I accept people for who and what they are inside rather than outside. Disabilities are only emphasized when people insist on talking about them. Thank you for writing this article.

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