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Special Needs
How do you reply to people's stupid comments?
What's the stupidest thing someone's ever said to your face and how did you respond to them?
I actually had someone once tell me that he and his wife made a pact that if they ever had an autistic child they would put them "in a home." I was dumbfounded and had nothing to say. I can think of a million things now of course! I also hate it when I mention to someone that I have an autistic child and they say, "Aww, I'm sorry." I don't know why, but it really annoys me and I never know what to say back!
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Re: How do you reply to people's stupid comments?
"All kids do that" drives me b a n a n a s. We hear it most frequently from our child dev specialist EI case coordinator. I let her slide. Everyone else gets the beagle lecture:
We have beagles. Beagles are bred to do two things, sniff and tell you LOUDLY when they smell something. Other dog owners love to tell me that all dogs sniff, all dogs bark. Not. Like. This. Same goes for the kid. "All kids" may do XYZ, but he's hardwired to take certain things to the extreme.
Mind you we're only a little more than 6 months past diagnosis, so I'm sure there will be more.
After I told SMIL his Dx,which we had gotten the day before, she said something along the lines of--We don't have to tell the other grandkids until he does something like beat someone up just to see what t feels like.-- I was shocked speechless and when I recovered I said something about that won't happen and tried to educate her about what ASD means for DS. I know it came from a place of ignorance but I still see red every once in a while. If anything DS is too passive.
One that makes me cringe because I KNOW I've made the same mistake and inserted my foot in my mouth at least once (sorry K!). It's when someone tells me he doesn't seem Autistic. I try to cut some slack because I know it comes from a place of not understanding that autism is a spectrum.
iI've only got one "I'm sorry" that bugged me. I just told her (my cousin) there's no reason to be sorry. My kid is still awesome and autism doesn't change that.
DS 09/2008
I'm sorry
Will she be able to live on her own? She's 11 months old, that's not even on my radar yet!!
You're done having kids, right?
People suck sometimes. I'm usually not good with quick, witty replies either.
There are two statements that drive me bonkers...
The first is any variation of "God has a plan." or "She was put here, on this earth, for a reason." I know some of you don't mind these statements, and some of you find them comforting, but they just piss me off. People usually say these things whenever I mention we are struggling with something, and it feels like they are saying, "Stop worrying, and let's stop talking about this, because it makes me uncomfortable."
The second phrase that I hate is, "She'll get there." Again, there is the feeling of, "Let's stop talking about this because it makes me uncomfortable," but ontop of that there is complete disregard for DD's diagnosis or my expertise as her parent. I'm sorry, but NO, you DO NOT know she will get "there." Her therapists don't even know that she'll get "there." I don't even know if she'll get "there." The truth is my DD may never walk, and eventually YOU WILL have to deal with that.
I don't have any good response to these statements. I'm not a snarky person, and I realize most people say these things in an attempt to ease their own pain. So, I typically nod my head and let people feel better.
Now that I typed all this out, I remember one time, the very first time we took Lily out to a restaurant (an Asain Buffet), a patron got mad at us because Lily's machines were disrupting his meal. We told him that we were sorry but our daughter needed these machines to stay alive. He looked us square in the eyes and said "Well, maybe she shouldn't be alive then." My husband was in his work uniform so we didn't say or do anything. But, as I recall, when we left another patron came up to us and commented, "I hope you aren't leaving because of that azzhole." Then she made a kind remark about Lily... so I guess the day balanced itself out.
I also hear "God has a plan" quite often and while I do believe that, I also feel like telling them that although they are trying to help me not worry, sometimes I just want to still talk about how much I worry! I just want to say "obviously God has a plan, because I certainly did not plan things to go this way! So shut up and just let me worry!!!" Some days i just want to cry but these comments make you feel like you need to be stronger and cant have any open emotion about your concerns for your child. But I do as you do and just nod to make them feel better.
My son is 6 months old and was born at 35 weeks with an intraventricular brain hemorrhage and hydrocephalus. He is doing tremendously well considering what we were told could be wrong. I am so thankful but I do worry about his development because so much is unknown at this point. I have a hard time because some people act like I shouldn't worry, I need to be grateful for how well he's doing. And I feel like others see he's delayed and wonder why I'm not doing anything abut it (which I am, I just don't tell the entire world about all the appointments, therapy, etc). It's just frustrating.
If it makes you feel any better, I was at a restaurant the other day and a woman was looking at my son in his car seat and trying to get his attention. Sometimes he doesn't focus his eyes and she turns to her friend and says "that baby won't even make eye contact with me." Like she was so offended that a little baby wouldn't look at her. I so wanted to just tell her that he doesn't like to look at ugly people but I held my tongue and just smiled. What do ya do, explain e whole situation to a total stranger?!
I tend to ignore the well meaning but dumb comments, mostly because I'm done giving a crap. It's the outwardly nasty ones that I bite back at. In real life I'm pretty quiet and diplomatic, except when someone attacks my kids.
A former friend once asked if we were going to put ds down when he was struggling on life support in the ICU when he was a toddler. That butt munch found out how many expletives I knew in English, and I threw in a few more in a couple other languages for good measure. Not my finest moment, but given what we were going through at the time, idgaf. I know that he meant were we going to discontinue life support, but the way he said it coupled with his attitude, I wasn't letting it go.
Ive had lots of strangers come up to ds and make remarks (sometimes nasty) about his weight, even one got confrontational. I don't hold back on them either. I've got some witty comebacks to them, but I no longer explain anything to them, I don't owe that to anyone, not even a stranger (not that I don't care, I just don't want to be emotionally drained worrying about what strangers think of me).
Mine are recent, but they have really annoyed me.
When we let MIL know about his delays/sensory issues, she advised us to "get a second opinion and not accept the first answer as the right answer"
My own parents spent last Sat night with him on their own, and when they dropped me off the following day told me that they think I am worrying too much and that they didn't see any problems with his motor skills and that they saw his imagination "running wild" (they know this is a huge concern of mine). They have also said that everyone has sensory issues so they learn to get over them.
So basically, I am worrying too much and the results of his evaluation really aren't an issue. I am chalking some of this up to denial but either way these comments hurt/annoy because I am still working on adjusting to the situation. Plus they are coming from two very loving sets of grandparents.
One of my friends came over to our house and saw that we had a head of lettuce that was getting old because it started to brown. He said 'no wonder your kid doesn't eat'. Yeah, that's it. My kid doesn't eat because I have brown lettuce. My kid is 14 months old. Nothing else was old in my fridge and she doesn't eat lettuce yet!
ARGH
LOL at df. I don't think you've ever had any foot-in-mouth moments with me, at least not from my perspective!
I don't mind the "I had no idea/you can't even tell she has autism" comments. I know the experts can, and her peers probably at some level know that *something's* up. I usually say something about it being pretty subtle with her, or talk about her having social struggles, etc. It usually comes from another parent when I've told them about the dx, and at that point helping them understand a little more is a good thing, I think.
The only comment I've gotten that still stings a bit came from my ILs when we told them about the dx -- they basically said to DH, "well, are you sure this isn't just because she doesn't get out enough?" I was a SAHM at the time. It wasn't said to my face and DH set them straight, but still -- ouch. Ironically, one big reason we had a dx was b/c she'd been in a toddler class, on her own, for more than a year with a particularly attentive/aware teacher who noticed some of DD1's differences.
DD1, 1/5/2008 ~~~ DD2, 3/17/2010
Oh good! I'm pretty sure I said something along the lines of "I would never have guessed" a few cookie exchanges ago when I knew nothing about ASD and we were just starting the path to a diagnosis. I don't think the ink had even dried on the referral to the Dev Pedi. Anyway, looking back I feel a little dumb! I'm happy I didn't annoy or offend you. :
DS 09/2008
I would love to see those people put in that situation!! Now first off, I wouldn't blame anyone for doing what they see fit in the situation they are presented with.......BUT if you've never been put in the situation you have no idea what you'd do! My child is likely autistic and it would be utterly ridiculous to "put him in a home". First off, he's TWO. 2nd off, he's very sweet and loving and WELL BEHAVED. All children with autism are different. It would make no sense for me to "put him in a home". Literally, none. He doesn't talk or interact with others his age or play with most toys. Those are his differences. You'd put someone away for that? Why??? He's not doing harm to anyone, not even me.
The worst thing anyone has said to me were people who (obviously!) didn't know my situation. I do daycare at the YMCA. This past week I had my son in a high chair and he was finishing a snack. I had a new mom ask, "is that kid ok?" I have no idea what she meant. I asked her to clarify and she still didn't articulate what she meant by that comment. When she left after dropping off her own child, I wanted to cry. YES my child is "ok".
Cam 6.6.10 - Autism, Global Developmental Delay, Mixed Receptive/Expressive Communication Disorder
Holy crap. The explicitness that come to mind in this situation surprised myself. Good thing they were said in my head and not outloud! Maybe he shouldn't be alive with that horrible attitude!
Cam 6.6.10 - Autism, Global Developmental Delay, Mixed Receptive/Expressive Communication Disorder
That's probably the one that annoys me the most, too. I'm sure they mean well but they're dismissive or seem to think you're a hypochondriac for having your kid in 4 different therapies, not realizing that the fact he actually qualified for 4 different therapies means there are issues. Or they'll ask what his delays are and after I give a simple, matter-of-fact summary, say, "Oh. Well, that's not a big deal; it could be worse. I have a niece's friend's daughter who ..."
I don't think I have a good standard reply yet.
A litte background before I tell you the worst comments we get. We had a son pass away at 6 months old, and then adopted Sir I from Korea. We had said no to SN's since we'd just lost Alex, but at 10 months old no one knew his diagnosis. Knowing that, here is what I get too often to count:
"Well, God knew that you could handle Sir I, after going through all the crap with Alex."
or
"Alex had to go to heaven to open space in your lives for Sir I"
or
"You are a better mother to Sir I, after what you went through with Alex,"
Seriously, I get this all the time. These people don't seem to understand that I would give my eye teeth to have them both!!!! It's not a one of the other thing to me. Who knows what direction our lives would have gone if Alex had lived, but really????
Some of these really blow me away, and I thought I'd heard it all, between the adoptions and the special needs. I have never been tight-lipped, but learned that it's better to let rude people wallow in their ignorance, because I'm not going to enlighten them. That's been wildly freeing, allowing me to ignore their questions and stares or occasionally fire back some witty quip. My number one concern is that my children don't hear/understand the exchange, because I never want them to feel "less than" because of someone's rude comments.
Still, I'd have seen red and would have launched a full verbal assault on anyone who dared to assert that my child would have been better off dead or that any good at all could have come from the death of my child. JoJo and mopdop, I don't know how you were/are able to contain yourself. I would likely have to be physically removed from the situation.
The things that drive me crazy (regarding special needs, there's a whole other list surrounding adoption) include:
1. "All kids do that," for all the reasons listed above. I don't need you to try to make my son's situation look better, and I'm not attributing everything he does/says to his condition, but it would be a lot easier if everyone just faced the fact that he is not typical and we could address his issues head-on and without glossing over symptoms.
2. "He's not going to turn out like that because he is so loving/you love him so much," most often from our parents, in response to my fears about the long-term prospects for children with FASD. I'm sure most of the FASD teens who made bad choices and couldn't control their impulses and got into trouble with drugs/alcohol/early sex/the law were loved by their families, too. That doesn't heal the brain damage that causes them to sometimes act out on impulse.
3. "He's got so many strengths!" Yes, we know that, thank you. But right now, I'm concerned about his delays/major health issues. Of course we will continue to build him up, but I am looking for support for the less than rosy side of this.
4. "That's rough/he's really behind. But is the tutoring/IEP/therapy/etc. helping? Is he ever going to _______?" I don't know, but thank you for boiling it down for me. It's great to know you'll only judge him as a person by what he cannot do.
And the worst:
5. "Well, you wanted this, right?" Clearly, since I wanted to adopt a child who might not otherwise have a family, I clearly wanted to spend the rest of my days worrying about his prognosis. To be honest, we were open to some special needs, but never expected a FASD diagnosis. Either way, I never "wanted" my child--or any child--to have to struggle like this. And just because I stepped up as someone who wanted to help a child who might otherwise be forgotten by most the world does not mean that it's a cake walk or that I somehow got what I deserved. This is not a cautionary "be careful what you wish for" tale. I love both my boys with all my heart, but that doesn't mean that I can't be sorry for their/our difficulties, nor does that sorrow in any way mean I regret my choices. Knowing what I know now, I'd do it all again in an instant. I am so blessed to have these boys, and am lucky to be the one who gets to help them through their struggles I hope they never have.