xmlns:og='http://ogp.me/ns#' Yeah. Good Times.: Guest Blogger: What to think about people who say what not to say

Thursday, April 7, 2011

Guest Blogger: What to think about people who say what not to say

Continuing what shall now be known as "Controversy Week" here at Y.GT., today we have a guest post written by my friend who comments here as Cactusinmypants (because bitching about your cats is like bitching about the cactus you keep in your pants). He doesn't blog so I have nothing to link to, sorry.

The other day I posted a link on Facebook to an article written by my friend the Domestic Goddess and posted on the website Many Hats Mommy called "What to Say and What NOT to Say to a Family Dealing with Autism. I posted it because I thought it was awesome, but my friend reminded me of the conversation that we have had before, that he often feels intimidated by parents of kids with special needs because he hears us (me) complaining about NT-only parents, he wants to help but he has no idea what to say or do about it and he's afraid he's going to do or say the wrong thing. He suggested that maybe he should write a list in response to the article. I said: BRING IT ON. And so... here we are....


What to think about people who say what not to say.

Jillsmo asked me to write a little thing about people who do not have special needs children and how I felt that often, encountering parents with special needs children can be an intimidating situation. We've had this conversation a long time ago and she, as I recall, had not considered the intimidation factor. Since the list of "Things not to say to parents with Autistic children" list came up I felt it might be constructive to point out what not to think about the things people say to parents with Autistic children.

But before I go into that, I thought I would try to put things into perspective with a few examples that have nothing to do with that at all. For instance. I work for FedEx. FedEx is 6 different companies; UPS and the Postal Service are just one each. So, sometimes people call the wrong FedEx for their needs and I am often called upon to go on Express pickups, or Freight pickups: I am neither of those. Some people expect a Saturday delivery, that is Express and Home Delivery: I am neither of those. Often I am put in a position to have to explain that to customers because our main office does not. Now, I could get very frustrated that people don't know the difference. But that is expecting a lot. Since the other companies like UPS are not like that.

People react differently, but most feel stupid for not knowing. That is wrong, it's not their fault; we are confusing. It doesn't stop other drivers from being upset and frustrated by all the "wild goose chases" they have to go on because people are not informed. That is also wrong.

There are many situations and many jobs that have this problem; you hear it all the time. "Why don't people read the sign that the door is locked from the inside of the clinic?" ... well, people don't expect to be locked in, so they still push at your door in futility. "Why don't people know that you have to drive all the way around the school in order to pick up your kid? The arrows are painted!" Well, people just don't see why you would have to do that since the front door is right there!

I could go on, I am sure many of you have similar rules that people just don't get at your work or school, it's rather common. This brings me to the point that I am feebly trying to make. People don't really know what to do or say in situations they are unfamiliar with, but it's not their fault. Yes, they are ignorant, yes they don't often seem to "get it," and yes, they often do or say the wrong thing. It's because these situations are intimidating.
Would they rather say the exact right thing? Would they rather feel smart because they are fully informed about the situation? Of course.

I completely understand that it is totally frustrating for those of you who are put in the position of having to either explain or just ignore the ignorance displayed by people about the situation you know about or are in. They don't seem to get it and you totally do get it but they seem unwilling to get as informed as you are. But again, generally, people almost never, in their daily lives, have to really know what to say about or to parents with special needs children.... it's not their fault.

So what do you do?

Well, adjacent to the list of what not to say is a list of what TO say, that is great. But as most of you know, very few of the people you encounter will ever have the opportunity to read that list, and now you are just stuck being frustrated.

So, here is a list of things you might consider when someone says the wrong thing.

1. "G-d doesn’t give you more than you can handle."

O.K. this is little more than a platitude. But what the hell do they say? They are intimidated by your situation, they have no idea what to say, they can't imagine what you are dealing with, but they are really trying to relate. Many people have had situations that seemed rather daunting and they use this little saying to get them through. They are trying to say that many of us have stuff to deal with and often times we do not think we are the strong ones until we have those situations thrust upon us, then we kick in and deal. You are not the special strong ones, you are people who were forced to be strong because you have no other real choice in the matter. God knows that many of us have that strength within us that is rarely tapped... but it's there. Some can't, though. They fail and fall, crumbling at the daunting task. So that statement is factually incorrect, but it is comforting to those who need to believe it.

2. "Your kids are so lucky to have you for a Mommy!" 

O.K., well ... they are. Even if they didn't have Autism, they are. However, if you suck at being a mom with an Autistic child, that statement acts as a cheer leader type of encouragement. That's all that is, take it as a compliment. My kids are lucky to have my wife as a mommy. If we gave them up for adoption, they would be lucky to have their adoptive parents as parents. Look at it this way, if you are beating your kids in public and only had them for the government check otherwise you would have aborted them.... then you would not get that statement from anyone.

3. "I don’t know how you do it! You are so strong/amazing/such a good mom!" 

Listen, here is the thing. Children are abandoned, they are mistreated, they are stuck between feuding parents, left alone to raise themselves, ignored, abused, and pushed off on nannys and day care. People know this, and frankly, lots of people are guilty of it. When we had our first, we were completely unprepared for a baby. Our work schedules simply didn't comply with our parenting obligations so we handed him over to day care. It killed us, but at the time we had no idea what to do. We got better at it later, but we missed so many of his "firsts." That is what they are talking about. They are jealous of your shitty situation because they couldn't make that kind of real decision based on priorities that are important. Maybe you don't feel special, but you are, own it and deal with it.

4. "He’ll talk when he’s ready". 

O.K. this is stupid. This is an attempt to pretend to actually know something they don't. But it's borne from experiences where "normal" kids just stubbornly did not talk when the "Dr. Spock" book said they should. Also, it is meant to be an attempt to give you an out, that you are not a bad parent, that some kids develop on their own time. They are trying to ease what they may perceive as your trepidation about your childs development. They are trying to be nice.

5. "He’ll eat better eventually or when he is hungry."

Same thing. They have no idea what Autism is. But again, "normal" kids eat weird shit all the time. They are only speaking from the limited experience they have. However, this is just the kind of statement that begs a tutorial about Autism; if you have the time, there is a great opportunity to explain that to them... nicely! You always want more people in your corner than people who you told to go read something because they are really getting on your nerves with all the idiot crap.

6. "Can’t you just discipline him?" 

Hey, this is not just yours! LOL!! Don't think for a second that people only say that crap to parents with special needs kids. Look, unless your kid wears a helmet and drools while rocking back and forth, people can't readily identify what his problem really is. The immediate assumption is that you suck. So... O.K. go ahead and spit in their faces, they are assholes. I think my response would be "Maybe you could work on your self control over commenting on other people's parenting skills, we could then work together on the same issues."

7. "He’s manipulating you. He’s just trying to get attention. " 

Free parenting advice is worth every penny you pay for it. This sounds like a mother comment; or at least my mother in law anyway. She has lots of shitty comments like this that roll off her tongue when I'm not there. Oddly, I never hear them. Why? Well, because I am an asshole, and by that, I mean that I have no qualms about being an asshole in defense of my kids. But seriously, they are just trying to help you get your kid through their own experience; young mothers seem so clueless and fearful. It sounds shitty I know, but they actually think they are helping.

8. "I’m so sorry!" 

Well, I feel sorry for people who feel they need to say this, but really, let's get real here for a minute. You know damn well that if you had your druthers your child would be a semi-genius with all the "normal" kid stuff: not for you, but for them. It's hard to watch them struggle, it's hard to see how society will not understand them, it's  hard to know that they may not be choosing between Yale or Harvard, that their future really depends so much more on you than on other kids. They are really "sorry." I know, it's rather insulting. You love your child and he/she is the best thing in your life, but give people a break; maybe they understand how much harder it is?

9. "What’s WRONG with Him?" 

They don't know. They just don't. And they have no idea how to express that in a good way. Some people are stupid, some just are uninformed. They just... do... not... know.

10. "Normal kids do that, too!" Or, "Oh my kid does that! No big deal!" 

Alright, I have used the word "normal" pretty often in this little writing, and that, I suppose shows my ignorance. But once again, how do I separate your Autistic child from my non-autistic child when describing behavior? Sure, my kid shit his pants every day.... every... damn.... day. He wouldn't bring an extra set of clothes so I had to go to his school... every day... to find him in the bathroom and give him new pants. Other parents didn't have to do this. Can I now relate to parents with Autistic kids? Probably not, but you don't know what my kid does. We are trying to include your child in the group, not dismiss your childs special needs.

11. "YOU ARE SPOILING HIM." 

Yeah, I don't know any parent who didn't have to hear that at least once. This is where I say "get over yourself."  The fact is that being a parent is really fucking hard. I would love to be able to relate to a parent with an autistic child and be the one who really gets it, even be able to watch your kid every so often. My kids are so cool about all that, I am very proud at how non judgemental they are. We (my church/school community) know 2 Asperger's kids, we like them, they are weird, but we still treat them like ever other kid. My son has a learning disability: he can't read, but he is still accepted. We (those of us who really want to be informed about Autism) are here for you. We are good people. Sometimes we say stupid things, but let us in. We can help.

That's all I wanted to say.



Comments (28)

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I really like this post. I think no matter what you do sometimes you are going to offend people. It can't be helped, and frankly not offending anyone would mean never speaking at all. And while some people might wish that on others? It's not realistic. We need to dismiss stupid comments for what they are, stupid comments, and move on. Most people truly do mean well, even if they come off like an asshole.
1 reply · active 729 weeks ago
Not speaking would probably offend somebody too.

Stupid comments I can mostly handle, even if they're ignorant. It's malicious comments AND comments from people who really ought to know better, (family) because they've been told over and over again, that I have an issue with. Even so, I've started getting better with comebacks. It's taken a while though.
Absolutely spot on. I always feel disappointed when ASD parents complain about the insensitivities of NT kids parents. I know if not for the fact I became an unwilling member of the Autism community I would not know what it;s like to sit on this side of the fence. It's the same as being around someone who is recently bereaved, or has cancer. Knowing the right thing to say is impossible because everyone responds differently. The only thing I would ever suggest is don't judge or minimise. We parents of ASD kids need to cut others some slack for not knowing how to respond. Some people are complete pricks and need to be called out on their insensitive comments, but most are well intentioned and probably cringe after they walk away and think about what they said. :$
My recent post Arthur Highlights Aspergers
I like what you have written. You have thought carefully about this and it is insightful and honest. As a mother of an autistic kid, I appreciate when other parents ask me honestly about the autism and admit that they just don't know what to say but want to learn.
My recent post Gah!
"There hath no temptation taken you but such as is common to man: but God [is] faithful, who will not suffer you to be tempted above that ye are able; but will with the temptation also make a way to escape, that ye may be able to bear it. Wherefore, my dearly beloved, flee from idolatry." I Corinthians 10:13 -14.

I'm a Christian, but hopefully not a bumper sticker one. The verses that have been twisted into "God can't give you more than you can handle" actually deal with TEMPTATION. Like lust and stuff. And God doesn't give you more than you can handle WITHOUT GIVING YOU A WAY OUT. Surely these folks aren't meaning I ought flee my children?
My recent post Snug Blanket of Homeschooling Damn Straight
Dumb theology like that drives me nuts. I get that a lot from my Christian "friends" and I think it's just a way for them not to have to do the real Christian thing of bearing one another's burdens. How much easier it is to pat me on the head, tell me God won't give me more than I can handle, tell me what a great mom I am and how they'll be praying for me. Like cactusinmypants, I can deal with "sorry" because at least that expresses understanding that things can be tough. Love the FedEx analogy! Thanks for a great post!

My recent post Snug Blanket of Homeschooling Damn Straight
I like this one too. Thanks for the perspective.
My recent post Verbal Expression may not tell the whole story…
Well said. We autism parents need to remind ourselves that there was a time when we didn't know jack shit about autism either and probably did or said very similar things without realizing it. No one is perfect. Try to get at intent and seize the educable moments.
Yay cactusinmypants!
Kenneth Lilly's avatar

Kenneth Lilly · 729 weeks ago

I think it is always important to try to appreciate the perspective of 'The Norms'. Most of them try, not all of them are stoopid, and clearly this one is not.

Cool post.
Love this post. And if I had listened to any of those comments from my friends who had Normal kids my kids would never have gotten any help. They thought they were being supportive. Which is ok because it's better than the friends or family who have not acknowledged our daughters issues or abandoned me as a friend. Sometimes I think you can't win in these situations.
I absolutely appreciate getting the perspective of an "NT" parent. It is hard to know what to say, I totally get that. And who expects the general public to know all this stuff about special needs? What gets me though, is when family members don't even bother to educate themselves and read a little about the disability. There's just no excuse for that.

P.S. My package never got delivered...
My recent post BIP- Easy As 1-2-3
I have both NT's and a specturm kiddo and I've heard and said it all. And most of the time the really stupid things I say come out of my mouth beofre my brain tells my mouth to SHUT UP. I usually wind up apologizing for my stupidity and I hope the parents can see I mean no disrespect, harm, insult or meanness, just that I too can be an blabbering idiot.
My recent post The train and horse thing
This is a great post. I've heard all of these before. I really try to focus on the speaker's intention, not so much the words coming out of their mouth. If I'm certain the intention is good I let the words go. But sometimes they still sting a little bit. That's my issue, however, not necessarily theirs.
My recent post You Like Me! You Really Like Me!!
Great post - I think focusing on the person's intention and also trying to figure out whether the person is interested in learning how to better phrase things is a really good idea in most of these cases. If the person is truly good-willed, I would rather they say something than to completely avoid the topic altogether.

As I commented elsewhere earlier this week, I used to become offended at some well-meaning things my MIL would say and now that she has mid-stage Alzheimer's, I would welcome any of our former conversations.
My recent post Update on Spring Fever
I really like this. I like the honest conversational style and I like the message.

I've worked with special needs populations my entire career. Adults with illnesses, children with developmental condition...lots and lots. And despite working, advocating, treating and educating...I am still not psychic. Things that I say that most people will find encouraging and supportive will be seen as patronizing by a few. Or I will hear someone say something to a patient that makes me wince and the patient will light right up.

Huh...

And that's with loads of experience.

While there is never any excuse for rudeness or insulting statements ever, there needs to be room to allow people to simply not know. And be clumsy, and to acknowledge that their clumsiness may be an honest attempt to offer support for a situation that they know is complicated and often difficult.

I'd been thinking about a post like this for some time - but you said it so beautifully. I'm going to move it to the back of the pile.
My recent post Autism and Differential Diagnosis
Very good post, thanks for the perspective.

I've written posts in the past about things I wish people would stop saying to me, about my autistic son (very much along the lines of what you've stated). I've also included in such posts, things that would be more helpful to hear. I wrote such posts because I lacked the fortitude to directly confront people saying such things, and hoped they would read and understand my perspective instead (much as you have shared this post with the same aim).

I'm still very irritated that certain close family members say the same ignorantly annoying things time after time, even when I have done my best to educate and correct them (also time and again). Some people just don't "get it", and maybe never will. Your post at least helps me feel better about those people.
My recent post I am aware
I have one child with asd and one who is typical, and I struggle on both sides of the, every kid does tha, comment. Sure, I hate hearing it when talking about K, but then I will see something someone writes about their asd kid who is the same age or younger than my nt son and think, that is totally just the age. Ben does that, too. But, I hold back from saying it bc I know how it feels. I think as time has passed, I have realized some of the shit K foes IS just her being a typical kid. And I am aware of that and don't take that comment so personally. Really, I should be glad she is doing something normal. She might have asd, but not everything she does is asd related. Important to remember.
Ha! As Mommy of an especially needy boy, (not Autism, just other crap), I've heard ALL of these, and react according to my mood at the time, from brushing it off and ignoring the comment, to pointing out the ignorance in a nice way and doing my best to educate, to going crazy ass psycho mommy on the person.
My recent post Transient Magic
You know why I love coming here, Jill? It's because EVERYONE is welcome and EVERYONE makes a good point. Maybe EVERYONE doesn't agree on the same methods or ideas, but EVERYONE is respected enough to get it out there. LOVE that.

Thanks for giving us that place.
My recent post What Now
Well said. I appreciate you perspective very much.

I wrote that there post that yer referring to and stuff. And, for the record, it was meant as satire, pure and simple. Not to complain about NT parents, not to be rude or make anyone feel stupid. So if they did after reading that, I am sorry. Of course, people that know me in real life know I am rarely serious.

The truth is many people are well meaning. But some aren't. Some just don't give a sh*t and I have gotten good at knowing the difference. Funny part is all of those things I wrote? Family members. As in, related people who should love my kid unconditionally an
d don't give him the time of day. Their loss, he is amazing and they will never know it.
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3 replies · active 728 weeks ago
Which reminds me, there's something I've been meaning to add to this whole thing here:

I think it's all well and good that people who don't know you are excused because they don't understand autism... but family members do NOT get a pass and this list here does NOT apply to them. They're family. They're supposed to learn. They are not allowed to use ignorance of autism as an excuse. The day we got our diagnoses we all started on the Autism Expert path, and family members who are supposed to love our children as much as we do were also supposed to go down the Autism Expert path, and if they didn't? No excuses. I don't want to hear about it. You learn. That's what you're supposed to do. And if you don't? Get the fuck out of my house.
Well, let me see that and raise you this.
It depends. If my cousin who I only see at family reunions has a kid with Autism, I don't have to be an expert. However, I do have to know their child has Autism and I do need to STFU if I don't understand some of their behavior.
If my niece had Autism, I would be the president of Autism Awareness Inc.
I wish we NT people could wear a badge that said "I'm cool, I get the whole Autism thing, no need to explain, your kid is awesome, ask for help if you need it". That could be a new wrist band like everyone else has....hey...I think I just had a great idea!
I think your original post was easily understood to be for satire purposes and your responses were really funny. But still, the list is real. So I hope you don't mind me using it as a tool to write mine. Your post was the reason I wrote mine, that way we can laugh, and think... together.
Your last bit "let us in. We can help." sealed the deal for me. Great post. We autie moms are a sensitive bunch, we can be just as exclusionary as anyone. We have learned we need to be warriors for our kids and it can be hard to let our guard down. I'm guilty of responding badly to these, especially the "god has a plan" variety.

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