What NOT to Say to Special Need Parents
While we’re preparing for the BlogHer Special Needs Mini-Con, we’re dipping back and running posts from our archives. This one in particular got a lot of play around the internet when it when live, but recently was brought back into the forefront because a person in the comments. Read those comments. It is true people will always sit in judgment for parents of kids with special needs as well as parents of typical kids. But bullying? Attacking? It seems, well, that sometimes we have to do more than protect our kids; we even have to protect what we think and feel to be our experience.
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Recently a thread started on Support for Special Needs about what we wish people didn’t say to us. Given that we’re all different I’m sure not everyone will agree with each mention on this list but many of the items that people wrote in about resonated with other community members. A lot of the items resonated with me.
While we all agree we have the one or few that really bug us, most of us agree that most people who say these things aren’t mean spirited people. They simply don’t understand what they are saying is hurtful, annoying or bothersome. Maybe if we share this post with people in each of our lives, we’ll educate people on what we’d find helpful NOT to say to us…
– God only gives us what we can handle; He must think you two are special parents
– Using the word “Austistics” to describe people on the spectrum.
– Remember, you have to take care of yourself, so you can take care of them.
– He’ll speak when he’s ready to.
– When looking at my son using a reverse walker, “Wow, we need to get one of those for my (typical) 10 mo old so he/she can walk better!”
– They’ll EAT when they’re ready. They’re not going to starve to death.
– You are so much stronger than me… I don’t know how you do it
– Pointing out that my non-walker shouldn’t be in a stroller, not knowing he can’t walk.
– That my child is just playing us.
– They just need discipline.
– You two are amazing for adopting two special-needs children. They are SO LUCKY.”
– Family and friends that downplay a diagnosis.
– For a child that has tics, saying, “Do you think she is doing it for attention?”
– Anything that implies that sensory issues are not real or that we’re playing into their “fear.”
– When people say they are sorry or offer condolences for a child with disabilities.
– Any comment that starts with “If you would just…”
– What’s wrong with her?
– Don’t worry she’ll catch up.
– She’ll grow out of it.
– Is your other son/daughter “normal”? or “Are your other kids ok? (As if to imply the child with the disability is not?)
– You are so much stronger than me and/or I don’t know how you do it.
I thought I would end this with a paragraph about the well-intentioned people and go into something about the people who talk without thinking, obviously, we think to ourselves. But I decided to open up a thread on what we’d like to hear from people. So here is the YES! SAY THIS! Instead list…
– I’ll be over on Saturday to help do laundry/wash dishes/scrub floors!
– I don’t know what to say to you, but I love you.
– How are you doing? (and actually listen to the answer)
– Quote from Elaine Hall: “How Can I Help?”
– Just wanted you to know I was thinking about you.
– I just made an extra dinner when I was cooking for us, can I drop it by now?
– I know you had an appointment yesterday, how did it go?
– Want to drop your kids off with us for an hour or so? (Because people are afraid to take care of my kids, when this happens, it feels like acceptance and support.)
– I’m on my way to the store, want me to grab you some milk or bread?
– Need any help at bedtime with the kids?
– I’m coming over to watch the kids right now for an hour so you can take a nap.
– We’re on our way to take care of the yard work.
– Sounds like you’re doing a great job.
– Here’s some things that worked for us. (preferably from people who “get it.”)
These are just a sampling of what some Support for Special Needs community members preferred…obviously, we’re all different and some on either list may or may not resonate with a particular parent of kids with special needs. Again, for me, I never got mad about kids asking questions or parents helping their child ask a respectful question. I always minded rude adults who encouraged rudeness in their kids. I never minded any of the items on the NOT list from people who cared about me because I knew their intentions were good. As the years go on I am better about saying why something bothers to the person so they understand.
One thing seems to be across the board though; special needs parents would like people to think before they speak, especially in front of their children. We’d like people to see our kids as people, with feelings. I’d like people to know that when they see what they perceive as a negative is not necessarily a negative. A woman once said to me, “She’s just walking? How old is she?” On a strong parenting day, as I like to call them, I excitedly said, “Yes! She’s young! I think it’s absolutely fabulous she’s walking!” Not sure when my daughter would take her first steps we were thrilled she was walking independently by age three.
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About The Author
Julia Roberts
Julia Roberts is founder of Support for Special Needs and has been a regular contributor since its inception in May 2010. A mom to two kids with special needs, she didn't want other parents to feel what is the often isolating world of raising a child (or two!) with disabilities. Her kids had kidney transplants at the age of eight and will need liver transplants in the future as a result of ARPKD/CHF. They both have vision disorders and learning disabilities.
This is fantastic, Julia. I love it. Thank you!
Thanks for your input!
Hope I have always been supportive of you and others with special needs kids, but it is always helpful to read information that you shared in this article. One thing is sure, if I said something offensive, it was just because I needed to be educated. I remember my dearest friend at the beginning of an adoption process talking about her experience and I said “Why did the mom give up the baby?” I now know how offensive that is to say, but it was so great that she was able to tell me that “we now say the baby is ‘placed’, not ‘given up'”. Life’s lessons just keep coming. Thanks again for your openness.
Jill, you have ALWAYS been a compassionate ear and a supportive friend. Many of your comments over the years have brought me to tears because you were basically saying you wished it would get better, you were praying for us and you were sending us love. We all – special needs parents or not – can use that!
RETWEET!! YES YES YES
Thanks Jo-Ann for the Tweet…
This is a great list. In addition to “he’ll talk when he’s ready,” I get “and then he won’t shut up!” Like that’s a bad thing.
As far as the positive, I’ve had friends introduce me to others they know who have special needs kids. They are always so worried about doing it, but every time they do, I’ve met the nicest, more supportive people. Community is the most important thing for making it through!
What a perfect list! Thank you so much to everyone who contributed to this!
It was a great collaborative effort! Thanks!
This is eye-opening. I know I’ve said some of those phrases that are on the “not” list, and I never intended them to be hurtful or rude, but encouraging. I really appreciate that you put a “Say This” list on there. Such great suggestions! I will be retweeting and listing on Facebook. Thanks!
(NJA) Jennifer,
It is not intended to make well-meaning, caring friends and family feel bad. So I want you to know that we know you didn’t mean it in a hurtful or rude manner…and we thank you for wanting to know what’s on the YES! list and also sharing it!
My favorite thing to hear and I’ve heard it from many people that I love dearly. ” It WILL be OK, i Just know it. ” Whether it’s ok or not, I love hearing this.
When the baby is born, DO say “Congratulations!” You’d (well, probably not you) be amazed how many people don’t say that, but as parents, this is our baby, not our cross to bear. We deserve congratulations, someone cooing over the all that hair, telling us she has Grandma’s chin, etc. Not pretending nothing is wrong, but please remember that the birth of our child is a joyous occasion, not a mournful one. The more people who acted that way, the easier it was for me to believe it really would be all right, however things turned out. And really, if you don’t know what to say, telling me how lucky I am to have such a beautiful baby/child will always be appreciated. Since that’s how I feel, I’ll always believe you 🙂
I had to learn early on to separate out the people who were saying things they though were supportive and things they really believed (like the God choosing us for parents stuff), from the people who were spouting platitudes and simply thoughtless. Before I had my child, I would have been saying the “don’t” stuff too, thinking it was supportive and comforting. Taking offense when none is meant isn’t going to help my kid, because she needs all the support and love she can get.
Carrie, those are beautiful insights. I’d love for you to write an article on the birth of a baby with issues and how we should celebrate with them (us)! Up for it? Let me know.
While I was reading the “not to say” list, I kept thinking “gee, I don’t know what I should say”. Thanks for part two.
Wow, I’ve never heard this one “That my child is just playing us.”
I think people are ignorant for the most part and just don’t know. The average person isn’t trying to be vindictive.
Hey this sounds like a great rant! (hint 🙂
Thank-you for this list and the “what to do list”. A friend listed it on their FB page and now I know this whole new support group of people. I’ve passed this blog on to many friends, asking them to pass it on too. The only thing I would add is to include the parent(s) and child in activities. Whatever your group, let the parent(s) know you’d be willing to help with the child so they could be included in a function, especially if it is a social event. Many times we don’t/can’t go, because we don’t get to socialize because we need to care for our children when there.
I especially love how you pointed out that we know when people are saying things out of love. I’ve heard many of the “wrong” things but I took it the way that I know the person meant it. There’s definitely a difference in somebody who doesn’t know what to say (and believe me, there have been times when I didn’t know what to say) but means it in kindness, and those who feel judgemental. I realize now that others often react on my child based on how I present him. I used to be fearful because I was dreading the kinds of kicks and digs that I was receiving, but I expect better of others now, and they usually live up to those expectations. If I introduce him confidently and warmly, he’s received that way. If I’m trepidatious, they respond to that, as well. It took me a while to learn this, but the lesson has been invaluable. 🙂
So totally coincidentally I wrote a blog post recently that said some very similar things. (A disclaimer in case anyone clicks through, my post is entirely self-centered and about my own situation rather than being universal. 😉 ) I forgot about the condolences/”I’m so sorry” one – that one stings so much. Thank you for adding the “YES! Say this!” list at the end – I wish more people would stop and think about their words and turn them into something positive and helpful. I am going to share this post far and wide.
Thank you for the lists. It made me cry when I read the YES!!! list. We rarely have anyone offer to help us with things & have only a couple of friends & family who check in on me & my husband to see how we are doing or if we need anything while taking care of our little girl. It’s hard for me to even walk a few feet into the other room just to do something ‘normal’ like load the dishwasher or a load of laundry because I have to watch my daughter so closely. I’m always up very late while everyone is sleeping to do housework or laundry. It’s the only time I have to do it where I am not nervous about what events might take place while I’m just a couple feet away.
I’ve heard “I don’t know how you do it, I *never could*”. That one always makes me wonder what they really would do!
LOVE LOVE LOVE THIS!!! My all time most hated thing for someone to say is “I don’t know how you do it” like as if they wouldn’t do it for their child?? Thank you for letting me share this!!
This is great! So great, in fact, that I linked it on Facebook for all of my friends to read. Quite frankly, I’m sick of people telling me that don’t know how I do it and that God must think I’m awfully special, blah, blah, blah. The one thing I would add to this list is this: “Don’t tell me that I need to come to terms with the fact that my child may not live”. Thanks for this great website! Laura
P.S. I’ve been told, probably close to 500 times now, “I don’t know how you do it, I couldn’t do it”. I take this as a slight compliment because the person is admitting that I’m stronger than she is. On the other hand, the person is implying that my son is a train wreck who requires far more than what she could ever imagine. Anyway, I have always replied with, “Yes, YOU could. If it were [insert her child’s name], you WOULD do it.”. I try to make the person understand that I love my child just as much as she loves hers and that I do not consider him to be a burden. I am honored to be “chosen” and capable as God apparently believes me to be (I’ve been told the “God only gives you what you can handle” line too) Over the past six years, I’ve learned not to be too terribly offended by comments made by friends, family and acquaintances. I know in my heart that they’re not trying to be rude. Sometimes they just don’t think about how their comments could be offensive. Besides, I have enough to worry about without their comments to bother me. As I mentioned in my post above, the ONLY comment to date that has really rattled my cage is, “It’s a real possibility that your son may die. You need to accept this so you’ll be able to move on if it happens”. I don’t think I need to explain here why this comment is terribly bothersome. Fortunately, there has been only a couple of times when I’ve been told this. Each time though, it has taken me a few days to shake the uneasy feeling that this comment brings on.
Laura I hear ya, you have just wrote exactly how I feel and wanted to know if I can copy this and post it. Tks.
Of course, Alma! ; )
I failed to mention something here. Carrie’s comment reminded me.
I was recently pregnant and absolutely thrilled to be having another baby. My pregnancy was planned and very much wanted. When I told friends (who were familiar with my son’s condition) of my pregnancy, their responses were all met with a long pause of uncomfortable silence before they sputtered out: “Is this a good thing?”, “Congratulations, I guess”, “Oh my God, how are you going to do it?”, “Wow, was this planed?” and “You are one brave woman!” My excitement in revealing my pregnancy was quickly hampered by my friends’ reluctance to congratulate me.
Unfortunately, I miscarried my baby girl at 16 weeks for an unknown reason. I had to face the same people who had initially questioned whether my pregnancy was a good thing or not. They were sympathetic, but very consistent with the “…it was for the best” responses. It deeply hurt to lose my baby. I really needed people to just say, “I’m sorry for your loss” and leave it at that. I wasn’t looking for the bright side of my miscarriage, which they seemed to offer me with their condolences marked with relief.
I’m certain that if I am ever fortunate enough to be blessed with another pregnancy, I will keep my news to myself until I’m physically unable to keep it private. It saddens me that something so joyous in my life was questioned by my friends. Not only were they unsure about me having another baby, their comments told me that they don’t think that my son would be worth having again. This was my impression at least. I want to be able to feel confident about sharing news of pregnancy and, as I said, if I’m so fortunate to become pregnant again, I will feel more like a teen breaking the grim news to her disapproving parents why I tell my friends.
I am so sorry that you did not have the support you needed to grieve your loss. I do not know you, but I am so sorry for your loss.
The worse thing anyone has every said to me referred to the fact that my son with DS will have to live with us all his life. The comment came from a elder male extended family member who is actually a very caring and well intending person! And he has actually made this statement to me on more than one occasion!
I get this question a lot as well about my oldest. “Do you think she’ll have to live with you her whole life?”
Really? Do you think you’re “normal” kids will have to live with you their whole lives? No one knows from day to day what is going to happen to them and I think they forget that little fact. At any moment any of us could be put in a situation to be a caregiver or need care for the rest of our lives.
I told someone once, “Oh no. When she turns 18 we’re just gonna stick her out on the sidewalk with a sign – Sweet Girl Needs A Good Home.” People can say the stupidest things.
MaMere – may I borrow that…LOVE it! I’m more worried about my oldest TD kid living with us forever than I am about our daughter.
Sure! I generally only say things like that when I’m low on coffee : ) However, if I come up with anymore good ones…I’ll send them your way! LOL.
We’ve always had a lot of fun with the stupidity of automated forms from our school district. When our daughter entered middle-school because of her age/federal law, the district sent us a letter indicating that she would be in the regular algebra rather than honors algebra for 6th grade. Our daughter’s cognitive level is about 18 months. Had fun teasing my friend on the school board, the principal and teacher about that one. UGH!
I’m sorry, and I’m not sorry, but I find this list just a little ridiculous. Half of the things on your do not say list are legitimately rude, but the other half is simply things people say because there isn’t an easier way of saying it in laymans terms, the proof being that a lot of people are admitting they’ve said these things. Maybe you special needs parents are being too sensitive? special needs children ARE normal children, they sometimes fake or exaggerate their symptoms for attention, and sometimes they need discipline, so don’t tell people not to suggest it. Fact is, autism is 600 times more common than just 30 years ago. Im sure that’s mostly genuine cases, but I’m also sure that some of those cases are just parents baby-ing their children so much that they pull them behind. I’ve seen children without special needs who scream like banshees and their parents do nothing about it, and I’ve seen special needs children who behaved the same way and were reprimanded by their parents for it. In my humble opinion I think the special needs child who was disciplined has a better chance of growing up “normal” than the child without special needs who was allowed to act like a caveperson. Special needs or not, it doesn’t hurt ANY child to be disciplined.
AGREED. Most of the “don’t say” are fine, and some on the OK, particularly the last one, is one that FILLS ME WITH RAGE. If I had a dollar for every person that had a helpful suggestion, I’d have a cure for every disability for every child with a parent reading this.
And I always felt that having a disability doesn’t mean that discipline is out of the question. You’re not doing your child a favor by spoiling your child, and those are the child that unfortunately have to wind up in institutionalized care when they’re large and can be violent. Do you know how many teen/adult males with autism wind up arrested or even hurt by the police because they’re out of control and the police don’t understand? I don’t want my kid dead because I didn’t teach him the word “no” when he was a child.
So yeah, let’s try to keep people from talking to us, let’s suggest they say meaningless things to us, and let’s make believe we’re not capable of cooking or cleaning our own homes because of our child. I might as well just give up now. Special needs children are NOT an excuse to avoid parenting, and they are not an excuse to avoid running a household.
Maybe so many here have very small children, but at some point you have to get off the pity pot and function. (And that includes taking care of yourself, so you can take care of your child. I guess that makes you a bad martyr if you do that, though.)
Ann, this list was a compilation of things from many people – things that parents of kids with special needs have found helpful. I don’t know ANY parents of special needs kids who expect people to do things for them – or that feel they are entitled to get, get, get. People often has how they can help tangibly and what they can say that is welcomed…that was the spirit in which this was made. This was not a list from people who are pity-filled. I know many of the people (online anyway) who contributed to this list and all of them are not on a pity pot and function quite well – with no help, little help, or a lot of help. And quite a few of us also take care of ourselves as well…thanks though for your comment/input.
Kim, I take issue with almost everything in your comment and I’m sure others will address them, so I am only going to respond to one point. You say “sometimes they need discipline, so don’t tell people not to suggest it.” I have one special needs child and one NSN. And I’d be equally offended if someone — a friend or a stranger — “suggested” disciplining either of them. My discipline choices are no one else’s business just as the discipline choices of a random frazzled parent at the grocery store aren’t my business. It’s just rude to make any sort of suggestion or comment, unasked, about the behavior of someone else’s child. Period.
Oh I was sure even as I was writing my earlier comment that people who are overly sensitive would “take issue” with it but that doesn’t mean I don’t have completely valid points. I’m sure the child being disciplined feels its parents are being rude to them! But frankly maybe if people were a little more self conscious about how uncivilized both they and their children look, maybe they might actually do something about it. But since the topic is about special needs children, I’ll tell you, I was friends in school with people with both physical and mental shortcomings. One girl I knew was both physically and mentally handicapped, and I’m very sorry to say that her parents were very short tempered with her and sometimes even abusive. Now I would never want any child to be treated the way my friend was, but you know what? I didn’t even know she was mentally handicapped until she told me, and she also on one occasion told me that she was glad her parents raised her the way they did. I disagree, but obviously she could tell that her parents did what they did because they wanted her to better herself. They went about it completely the wrong way, but its better than a parent who just covers their eyes and ears and goes “lalala”, and that includes parents who just want to see the help their friends and family try to offer them as “offensive”. Do your own dishes and scrub your own floors, the most helpful thing people have tried doing and saying to you is on your “do not say” list.
You know what? We don’t care what you have to say! My daughter is cognitively 12 – 24 months and doesn’t feel pain. You can’t put her in “time outs” and NOTHING you do stops the “temper tantrums” because it is her only mode of communication that she wants something different. Parents with children like ours deserve (yes deserve) to have a place to VENT against people like you who are NOT THE LEAST BIT sensitive to what we deal with on a day to day basis. Have you ever overheard that a child like yours should not be allowed in a family restaurant, because you bring them in in a wheelchair and they don’t have “manners”? Well I have. Have you had your child stared at everytime you go into a grocery store or try to participate in any kind of community program – even if your child is behaving perfectly? Well mine does get stared at. Other children get “how cute” when singing or talking to themselves in a store; but because mine is 13 she gets comments and stares. Who are YOU to tell us how and when to discipline? If you don’t have a child with special needs and don’t deal with the life we have to 24/7 leave us alone.
Also I notice on “say this instead” list it almost completely consists of you asking people to help you with chores, buy you things and take care of your kids. Go ahead and ask, there’s no problem with that, but it would look better to your case if you could actually think of some things people could say to you first before complaining that they don’t know the right thing to say. And if you think it’s no ones business but the parents to discipline their children, then you must also agree that it’s no one else business but the parents to take care of their children. Me, I personally believe it takes a village to raise a child. It takes both the overly sensitive parent and the one that says “okay, enough of this bs”.
I notice, as a lot of other parents of children with special needs kids, that when people want to justify the opinion to keep judging and bashing someone for their choices, use language many in the special needs community do not like and is offensive (the R word) they often say we’re “too sensitive” and we need to let it go, that “it doesn’t hurt anyone.” Frankly, I’m tired of it.
When you come to a community that has shared a list of things that we find offensive, hurtful and insensitive, you don’t have a right to invalidate our opinions by saying it’s wrong. Have your opinion, that’s fine. But telling this community that we’re wrong in how we feel about how we are treated is not only offensive, it’s rude. When we share a list of things we find helpful, comforting and nice things that we appreciate gifts of words or help, we don’t need someone telling us we’re wrong to share it.
There were many things on the “say this instead list” – maybe you missed them. In case you did, all of the things we’d like to hear from people are compassionate thoughts from people that care. We want people to ask us how we are instead of tell us God chose us, we want them to ask about an appointment that could have been really bad/sad instead of tell us we should get over it, and so on.
There’s nothing wrong with that. If you can’t be respectful in having a different opinion you are not welcome here. If you want to judge us, you are not welcome here. We get enough of that in the world outside of our computers as the DO NOT list suggests.
Please refer to our Terms of Service and Community Guidelines https://supportforspecialneeds.com/about/community-guidelines/terms-of-service/ if there is any question of the behavior that is allowed here.
Excuse me, but I have tried my absolute hardest NOT to say offensive words. you’re sitting here and treating me like I’m just trying to offend people when I think it’s more than clear that thats not the case. YOU don’t have the right to tell me I’m wrong just because you don’t agree with me, and just because you got offended doesn’t mean I was being offensive. Maybe you should try and see the points I’m trying to make instead of just assuming I’m trying to offend you and getting offended, and blinding yourself to the sense I tried to make in between the perfectly justified criticism of this post. Don’t you think some of your friends and family might be offended that you think they’re rude and judgmental just for doing and saying the only things they know how to do and say for you? To me that sounds not only rude, offensive and judgmental, but also ungrateful. By the way, no, I don’t have a special needs child. I was RAISED by one. And I have a niece that will never walk or talk. I am no stranger to the plights of people with both mental and physical needs, but I also believe that anyone can do better than what they were given at birth, my father is proof of that. And if you truly cant, if you need people’s help, the people that help you, who try to say the only things they know how to try and comfort you, should be the last people you’re criticizing.
When all you have is a hammer, every problem looks like a nail. To someone like Kim who doesn’t know better, the solution to every child issue is more discipline. The one thing that has become clear in reading her posts is that despite her protestations and claims to vast experience with persons with disabilities, she simply has no idea what she is talking about. And that’s fine, everyone has the right to express an opinion. But we’ve all received insensitive and ignorant advice wrapped in the whole “I’m just telling it like it is” and “it’s not my fault if you choose to be offended”. It’s not just rude. It’s also entirely unhelpful. And like every parent of a kid with a disability, the best I can ask of an unhelpful busybody with an opinion and an internet connection is to polite ask them to stay out of my way. Kim, I’m going to make that choice to not be offended. But it doing so, you should know that your posts suddenly turn to noise. Useless, useless noise.
When I grow up, I want to be as wise and articulate as Robert. Thanks!
*rolls eyes* I was just about done with this stupidity, but I’ll just say one last thing before ignoring this whole page of useless noise and wimps who think they’re the only ones in the world who have to deal with their problems: It’s not just “I’m just telling it like it is” and “it’s not my fault if you choose to be offended”, it’s also, “get over yourselves and do better with your lot instead of complaining uselessly on the internet”. And you’re right, the solution to every problem in this world could come down to more discipline, not beatings, but sheer willpower, of the individual, if only more than only half the people in this world could actually toughen up and not place blame on people who not only have nothing to do with their bad luck, but are just trying to help. Yeah, it’s easy to say someone doesn’t know what they’re talking about and completely ignore everything they say, but it takes real discipline to look at yourself critically, face the fact that you might be wrong on some things, and try to do better afterward. On my half, I was wrong to say anything at all here, not because what I’ve said doesn’t have merit, but it’s clear that the people here just want to “vent” and feel sorry for themselves. I haven’t said the ‘R’ word yet but I’m going to relay on you what my father told me when I told him about this thread, “You probably shouldn’t have said anything, but if I had cried every time somebody called me a retard or beat me up because I was the weirdo who couldn’t talk right, I never would have gotten anywhere in life, and if I had pushed away my friends and family every time they said something stupid and thoughtless, I’d be a very lonely man too. And it don’t matter that you got intelligence Kim, if I hadn’t disciplined you, you’d be as good as a retard.” Now I know people are going to use that to make jokes at my expense. Go ahead, as I said, I’m done with this thread. Your lives are your own to either take control of or let slip away from you, and despite that I’m sure you think I’ve said all this just to insult you, I honestly wish you all do better with your lives. Peace out~
If your intention is to be helpful and supportive, a good way to do that is ask “what can I do to support you?” or “how can I support you?” If you are not raising a special needs child, you don’t know what the right things are to say. As a friend and sister to parents with special needs children, my intention is to be supportive. Kim, my sense is that your intention is to be right. Would you rather be right or be supportive? Love comes in all kinds of packages. I hope to be the kind of person who makes the effort to deliver love in packages that others receive as love. It seems to me that the list is about how to do that. Such a small price to pay. To say “I see you” vs. “I put you on a pedestal” or “I see your child” vs. “I see your child’s disability.” Don’t we all want that?
Kim,
What brought you to this discussion?
I think Kim needs to start her own forum for insensitive people who insists on making their points heard regardless of how others feel. I am not a SNP but I am a mom and parenting is definitely not an easy job. I often feel inadequate and not up for the task but I wouldn’t go back to being a non-parent ever as long as I have a choice and a breath in me. I think this forum is wonderful. I don’t feel SNP on this site are whiny, lazy, complaining, venting, blaming, self pitying, weak willed, wimps like Kim seems to want to label you. I believe all of you are stronger or have become stronger than most people and deserve all the support and help you can get. May your efforts to educate and support one another be blessed with many positive supportive strengthening replies.
It’s not possible to have a thoughtful discussion at this community when you speak to us this way. That said, I’m happy you had one last thing to say Kim, I hope you feel better now and can move on.
Nodding head in agreement with Julia.
These offensive posts by Kim have made me think about something: Are SNP (special needs parents) overly sensitive to comments made by others? Just like anything else, one can’t generalize, but as a whole it may be safe to say that, yes, SNP may be more sensitive to careless comments made by others because they’ve had to listen to so many. This might be something else that others need to take into consideration when talking with us – be sensitive to our feelings and understand that we’ve dealt with a lot of careless comments, so watch what you say if you have any regard for our feelings. A lot of people have said to me, “I hope this doesn’t offend you” and that preface alone makes whatever dumb thing that’s being said better.
Sometimes I really do feel like I’m hyper-sensitive, and over protective, and too deeply invested emotionally. And then I read something like the New York Times article people have been passing around, and I am reminded of why.
It’s true, we have seen and heard so many insulting and hurtful things, but we’ve also skirted around the edges of some very dangerous territory, places where the wrong choices by people who have very little investment in our kids could lead to tragedy. Someone like Kim doesn’t get that, CAN’T get that. And she’s been pretty arrogant about it, but perhaps her ignorance isn’t her fault.
I’m not so sure that we’re hyper-sensitive so much as hyper-aware. We know exactly who our kids can depend on. US. And so we are ever-vigilant, both to the hurtful things and worse. Because if not us, then who?
(Here’s that awful story: http://www.nytimes.com/2011/06/06/nyregion/boys-death-highlights-crisis-in-homes-for-disabled.html )
Rob, this is so well put that I will not add anything to it…except maybe that I wish I could have said it first (and as well!)!
I wholeheartedly agree with Robert that, in general, we are much more hyper-aware.
Yes, some SN parents are hyper-sensitive, but so are some typical parents.
Yes, some SN parents are too indulgent, but so are some typical parents.
Kim’s worldview seems to be clouded by her father’s – he had it rough, and he became a tough cookie because of it (bravo!), and I agree with him that if we let every unkind comment get us down, then we’ll end up spinning our wheels. However – and I think this point is where the rubber meets the road, and what Kim doesn’t seem to understand – just because people act this way, doesn’t mean we have to accept it as harmless behavior. There will always be a segment of people who will say nasty things, judge us, and assert that our children are better off locked away in institutions – there will be no changing them. What we must do as advocates is demonstrate through our words and actions that the segment of people who say and do these things are wrong. If we allow them to dominate the conversation, then they become the only voice that the rest of the world – the good and decent, but inexperienced, people – hears.
Hear, hear, Robert! Very well put!
This sort of list is one that I’ve posted on my blog twice (once for things to say/not to say during the dx process, and once for stuff in general, as I often get “he doesn’t look like he has autism”/”he looks normal to me” which is very annoying). None of my friends were offended so I don’t think I am pushing anyone away, as Kim said. Most of the time, these comments are said with love and the people just don’t have the experiences to see why they might be hurtful.
As I wrote in my post, “Discussing disabilities is a something a lot of people don’t feel comfortable doing because it’s easy to say the wrong thing, or maybe you don’t even know what to say to begin with. So, let’s go ahead and acknowledge this and give each other the benefit of the doubt. If you don’t know what to say, say that: “I’m sorry, I don’t know what to say.” And if you’re a parent on the receiving end of a comment that has hurt, try to gently educate if you are bothered.”
To the people who think “oh but they are said with good intentions!”
no, not all the time.
Certainly not when we are told that our kids aren’t REALLY disabled, they’re just [insert manipulative game]-ing us and we’re too stupid and wimpy to figure that out, see. That’s NOT good intentions, that’s essentially saying you don’t BELIEVE us when we tell you our child has challenges.
and saying “what’s wrong with him?”
Really? how can you POSSIBLY believe that is said with good intentions?
This has stuck in my craw ever since I read it the other day… the reality is that some people really want to be compassionate and show you that they support you and love you. Some people want to know what they can do to help, whether it’s bringing you a meal or helping pick up around the house or throwing in a load of wash or doing yard work. Or even just hanging out with your kids while you go to the grocery store by yourself. Most of us with special needs kids would never make it if we didn’t have support from friends, family, neighbors, folks from church, etc, and you just have to get used to admitting that you need the help. Kim is one of those people who just doesn’t get it, isn’t interested in supporting anybody. Most people are the other kind, I find, and thank God for them.
There is one saying that really hurts my feelings when family or relatives say it : ” Hope your son gets better”, or “May God CURE your son”. as if a special needs child is sick or have a disease.
I just hope that others would understand that is very disrespectful and that when they speak infront of a special needs child to consider that this is a person with feeling and he/she is not less only because they have different needs.
Is it wrong to tell a parent of a special needs child “I admire you”? Just plain and simple – nothing more than that – no added “you are stronger than I am” – just planly “I admire you” and sincerely mean it. A compliment for the way any parent handles their life and the raising of their children.
Meg, it is absolutely NOT wrong for you to say you admire someone who is a parent to a special needs child – I know that I always appreciate a sincere, not pity-filled compliment like that – although I bet you’d be able to parent a different child if you had to! Admiration feels weird sometimes because we’re just doing what we have to do! (Am I making sense at all?)
Robert, I’m not even sure about the search I put in to bring me to this blog but I want to say, please, please, please continue your thoughtful, insightful support of parents who have children with special needs!!!!!!!!!! YOU are what SNP’s NEED to help their cause!!!
Four years ago I couldn’t have imagined I would be googling these types of blogs but here I am, with identical twins who have a genetic syndrome, undiagnosed until they were 3 months old. I might have been KIM in my former life, even though it pains me to say that now. Kim, while I understand your comments, it saddens me nontheless :(.hh
People just can’t appreciate the challenges parents of special needs children face on a daily basis until they’ve been there…I get it. I try not to be angry or annoyed with people who make well-intentioned comments. But I will say I have a friend – who didn’t know our twins were “moderately globally developementally delayed” until recently who would consistently say “ohhh, you will regret when they can talk/walk/eat”. For months I just let it go with a smile but finally realized the best answer was “No, actually, I’ll be thrilled when they talk/walk/eat”. It laid the foundation for me revealing to our friends/family that our children where special needs…and always will be.
I have to say – and I’m proud to say – that I’ve converted people who use the “R-word” as a punchline on a regular basis to my side. I can’t say they NEVER use the R-word anymore, but the mere fact that they look uncomfortable when it slips out is gratification enough. Makes me feel like I’ve at least made them consider than words/comments DO impact others. It’s all about the baby-steps :)!!!!
I know I am really really late to the dance but I just had to speak up.
This list is obviously for those who DO CARE about those of us who are parenting children with needs that are not typical. This list was not for Kim who obviously wants to be whoever she is whenever she wants to be. There really are families with typical children or without children at all that want to be supportive. As you stated, not every one fit every person but it is nice to know what fits some folks.
As far as being sensitive, I see it as a constant state of healing. Many of the things we go through cause wounds. They may not be open but they may be somewhat sensitive so just as I might ask you as a courtesy to be careful of my broken toe, I enjoy having the freedom to express other spots that may be prone to injury or easily injured. This is our way of wearing a cast to protect a part of us that is “sensitive”. In my opinion, there is nothing wrong with that.
I just read all and I realize that Im making so many offense with my saying but all of them coming from true hart. Example on many occasion I say to parent “I don’t know how u can manage , or I don’t know how you do it” and it is true I Don’t Know. For me they are super parent’s. example She need to take her son to appointment @ 7am there is no transportation car or taxi to another side of town than go to 10am appointment for fizio another side of town plus manage the rest of kids to school , shopping , home another check-ups and no rain , hail , storm or anything can stop her. Don’t know how they doit. I believe it come from love. Sending Love from Russia
Another one I say is ” Remember, you have to take care of yourself, so you can take care of them” and I believe it. Many parent I know don’t eat or living on mornings coffees saying I just need a coffee and I will be fine, skipping breakfast , lunches , dinners because first is only once than soon become way of living one big race. Im offering to buy shopping or anything and I have to Lie YES Lie… example Im going to do my Shopping do you need something to buy you on the way ? PS It is a Lie I don’t need to go shopping I don’t need anything but I know if Im asking straight “Do you need something ? answer will be “No thank you” But if I say Im on the way to buy for my self than I will get all shopping list from formula feed to nappies and rest of stuff. Or most of time I will Lie example “They give me 2 pizzas so I brought one to you cant eat all of them” I Lie I didn’t I order pizza because I know that they come home late and that will no be dinner for rest of kids. There is people who will be happy to help only need to ask or tell us how.
The things on the “Not to say to us…..” list don’t bother me. What bothers me the most is when people say “don’t worry about it”. Those people don’t have special needs kids and they only see your child for a few hours may be a day or two a week, (talking about friends and family). That is the phrase that really ticks me off.
“Using the word “Austistics” to describe people on the spectrum.”
I was really disappointed to see this one on the list. I am autistic. The majority of autistic people prefer to be called ‘autistics’ or ‘autistic people’, NOT ‘people with autism’. And yet parents who never bother to listen to self-advocates keep undermining our desired terminology and pushing their own.
I’ve actually heard this both way from autistic people/people with autism. Sometimes we don’t know what way to turn, do we?
Oh my goodness, I needed this article today. I have heard probably all of those and then some. I’m here looking for inspiration for my own blog which I just started a few weeks ago and I have found it. Thanks. Hope you are still blogging.
Wow. Thank you everyone. I have a great appreciation for the support this lends to parents of children with SN. And this particular article (and the following conversation) is very helpful to remind people of the different experiences and reactions we can have, and that all of those are valid and matter.
One of my children has a dx of AD/HD and SID, and because these are both invisible and often contested dx it has been a long, hard road to support him and get him the school support he needs. When someone suggests or says outright that AD/HD is not real, or that it is solved with simple ‘discipline’ I am instantly fuming. I know that no matter what anyone thinks, my child is a beautiful, amazing person who is severely impacted and suffers greatly because of his differences and that is all that should matter to any caring person. It’s not a contest of who is worse off or a quick fix solved by simple solutions. We live in a culture (I live in CA, USA) where there is a box one must fit or struggle to work around it. Sometimes I wonder what percentage of folks actually fit in that box?! I long for the day when every single individual in their beautiful uniqueness can be appreciated for who they are.
Sorry this is sort of a rant but it’s where my thoughts went after reading all of this. I work as a para-educator in special education in a general education environment and LOVE the opportunity to offer at least those students whose lives I touch some unconditional love, understanding, and support. What I notice is that every. single. student. needs. this. Not just special needs kids. So it would do the Kims of this world some good to get on board with appreciating folks for their uniqueness and treating all human beings with respect.
“Using the word “Austistics” to describe people on the spectrum.”
I’m sorry, but by trying to ban the word ‘autistics’, *you’re* being offensive. The vast majority of autistic people *hate* person-first language. If you have a child with any disability, you should take the effort to find out what adults with that same disability have to say. And even a modicum of effort to find autistic adult voices will come across the preference for identity-first language.