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17 Jul 2012, 2:29 pm

I'm in somewhat of a unique situation having aspergers along with C-PTSD from other issues, married to a NT wife, with two daughters on the spectrum.

We ended up in the ER last weeked for my 6-year old daughter. My daughter has issues with band-aids or anything of the such on her skin. The blood pressure machines are torture to her.

Anyhow her oxygen was low so she had to have the little strip with the red light taped to her finger. Of course she was upset and kept removing it. One too many times my wife told my daughter "it doesn't hurt!" And I lost it.

I blew up, and yelled at her to "Stop saying that! Yes it does hurt! Stop lying to her. She's old enough now that she could remember this for the rest of her life. You don't want her memories to be you lying to her because it does hurt to her." (I'm still haunted by these memories from my childhood) "You don't have to understand it, but you better damn well believe me, it does hurt her just as real as a knife hurts you."

That shut my wife up, and then I tried to help my daughter. I explained that I understand that it hurts, but that her oxygen was low and they needed on to make sure she would get better. She may only be 6 but she's not stupid. I talked about how we had to get her oxygen up before we could take her home, so if she wanted to go home, we had to get her better. Eventually she tolerated it, but it still hurt her for the 2 days she was at the hospital. She had to get an IV later that day. And it was amazing how the tape on the IV tube bothered her more than the metal needle sticking into her arm. Thankfully after explaining things a bit to the doctors, autism, sensory issues, they did a great job. Wherever they could, they put cloth between the tape and her arm when they splinted her arm to protect the IV and that helped a lot. But that little adhesive strip with the red light on her finger, to her it still hurt more the IV.

It was just a cold/flu/pneumonia, and she's getting better now. But she was born with some heart issues, and had heart surgery at 2 moths old, so that requires her to get extra attention.

I just thought I'd share the story for NT parents out there. It's tough. You may not understand why things are the way they are. But trust what your kids tell you. Pain is nothing more than electrical signals in the brain. While Novocaine can stop pain signals from reaching your brain, your brain can create its own pain signals just inside your head. Regardless of where the pain signals come from, the pain is real to the person who receives them.



Ann2011
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17 Jul 2012, 2:57 pm

Nothing against your wife, but I hate it when people say stupid things like this. As if they can change reality with their words. I think it comes out of selfishness: because one doesn't want the person to be in pain, but they can't do anything to stop it, so they try to make the sufferer pretend that nothing is wrong. Adults do this to each other too and it is in no way helpful. If you can't be supportive, you should get out of the room.



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17 Jul 2012, 3:09 pm

Parents NEED to stop lying to their kids about such things. Pain and suffering is a part of life, that's how it is. If it hurts or is going to hurt parents need to be honest. I've been in and out of surgery enough as a kid to know in the hospital there will always be something that hurts or is unbearably uncomfortable or scary, and sugar-coating it is just stupid, and only the knowledge that it was part of the healing would help me to bear it somewhat.

I still remember the time as a teenager, getting ready for ear surgery. The surgeon practically jammed the IV up my arm and the pain shot through it like acid. Just a little pinch my @$$! ! :evil:



Wreck-Gar
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17 Jul 2012, 3:17 pm

Ugh, I hate when people lie to little kids, too. A few weeks ago I saw my mom squash a bug in front of my two-year-old and then say she would "let it go outside later." What's the value in saying something like that? :evil:



MomofThree1975
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17 Jul 2012, 3:34 pm

Ok, this is the NT in me but I have said that a million times to my kids (all have some degree of asthma so that particular machine is pretty common to them). Actually, what they respond to is not so much what I say but the tone of my voice.

I honestly would not have reacted that way to my husband. We both love our children and would never do anything to harm our children. However if we need to talk about something like that, we would do it in private. I think that makes a healthy marriage. We do not get our children involve in our marriage or even how we speak to them. I would never disrespect my husband in front of the children and likewise.

I do understand your daughter's sensitivies though and undertand that actually does cause her pain. Could you have pulled your wife aside privately and speak to her? Or even speak to her extensively before hand since this is not something new? How many people were around when you yelled at her? Did you ask her how it made her feel?



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17 Jul 2012, 7:27 pm

This is one of those times when I am not sure how to put into words what I am thinking. I hope everyone can understand that I am a respectful person and do not mean to ruffle any feathers.

First of all, I agree with you that sometimes parents do not do a good job of understanding things from their kid's point of view. And that is not just autistic kids. We have a tendency to overlay things with our adult cognition and our adult understandings, both of which are relatively irrelevant to a kid. I remember numerous examples of things that my parents told me when I was a kid that made absolutely no sense to me as a kid, but which now are completely reasonable from my perspective as a adult.

But the point that I do want to make, because I think there was one statement that you made that was unfair, is that your wife was not "lying" to your daughter. To lie is to intentionally tell an untruth. In your wife's understanding, it did not hurt. Because for most people--probably your wife included, the oximeter would not hurt. To accuse a parent of lying to their child when--in fact--what was happening was simple ignorance, is hurtful. Especially in front of the child. Because now instead of your child thinking "my mommy does not understand," she is thinking "my mommy lied to me." You may have very well caused damage to your daughter and wife's relationship, or at least to your daughter's view of your wife. If you persist in saying things like that, it is almost certain that you will.

I know you were probably caught up in the heat of the moment--I get that--but a more helpful response would have just been the part where you told her that to your daughter, it does hurt and then maybe telling her what she could do to help. As a mother, there is almost nothing more distressing than seeing your kid in distress. It brings out feelings of helplessness and despair. Your wife would not be the first mother to say the wrong thing when her only intent was to somehow make things better.

I do appreciate the reminder that we have to look at things from our kids' perspectives and not just our own. But as a mother, your admittance that you told your daughter that her mother lied to her was just too much for me not to comment on. For someone who has little knowledge of, or only rudimentary understanding of, sensory issues, the idea that an oximeter hurts is difficult to fathom. Because for the vast majority of people, it doesn't hurt. At all. She was not lying. She just didn't understand.



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17 Jul 2012, 7:45 pm

InThisTogether wrote:
I know you were probably caught up in the heat of the moment--I get that--but a more helpful response would have just been the part where you told her that to your daughter, it does hurt and then maybe telling her what she could do to help. As a mother, there is almost nothing more distressing than seeing your kid in distress. It brings out feelings of helplessness and despair. Your wife would not be the first mother to say the wrong thing when her only intent was to somehow make things better.

But the mother's intent is to make things better by denying the child's feelings and communicated expression of experience. How can this be in the interests of the child; the one who is suffering. Wouldn't it be better to acknowledge that this is uncomfortable instead of denying another person's experience?



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17 Jul 2012, 8:01 pm

Ann2011 wrote:
InThisTogether wrote:
I know you were probably caught up in the heat of the moment--I get that--but a more helpful response would have just been the part where you told her that to your daughter, it does hurt and then maybe telling her what she could do to help. As a mother, there is almost nothing more distressing than seeing your kid in distress. It brings out feelings of helplessness and despair. Your wife would not be the first mother to say the wrong thing when her only intent was to somehow make things better.

But the mother's intent is to make things better by denying the child's feelings and communicated expression of experience. How can this be in the interests of the child; the one who is suffering. Wouldn't it be better to acknowledge that this is uncomfortable instead of denying another person's experience?


Rationally, yes. But when your kid is in distress and it is distressing you, sometimes you do not act rationally. Especially if you honestly do not understand where they are coming from. The idea that slight pressure could cause unbearable pain is something that is very difficult to understand for most people, I would imagine.

And sometimes kids do claim things that aren't true in order to try to get out of doing something that they do not want to do. So sometimes it is not a matter of denying someone's feelings, but rather a matter of calling their bluff. And sometimes when kids are scared, their perception of pain gets skewed and they need to be calmed and reassured. And sometimes what a kid is communicating is not actual pain, but fear of feeling pain. Anticipatory pain. Which can be lessened by reassuring that it doesn't hurt.

Things are rarely as simple as they seem on the surface. And being NT does not make someone an infallible interpreter of the experiences of others, ykwim? And naming someone a liar because they failed to understand something does not seem like it was helpful to anyone.



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17 Jul 2012, 8:18 pm

Ann2011 wrote:
InThisTogether wrote:
I know you were probably caught up in the heat of the moment--I get that--but a more helpful response would have just been the part where you told her that to your daughter, it does hurt and then maybe telling her what she could do to help. As a mother, there is almost nothing more distressing than seeing your kid in distress. It brings out feelings of helplessness and despair. Your wife would not be the first mother to say the wrong thing when her only intent was to somehow make things better.

But the mother's intent is to make things better by denying the child's feelings and communicated expression of experience. How can this be in the interests of the child; the one who is suffering. Wouldn't it be better to acknowledge that this is uncomfortable instead of denying another person's experience?


I don't think this is the first time his wife has sounded like this. She's probably said stuff like that to him too; totally stomped on him just because she doesn't understand and thinks he's just full of beans, he's pathetic, lazy, worthless, and they're daughter's the same way because he convinced her to be that way. After all if it doesn't hurt them, they can't conceive how it could POSSIBLY hurt anyone else. Amazing.

People like that are the ones you tell you are autistic and they say,"well, we're all autistic, in one way or another." wow.

The best part is, she probably feels like its such a burden to put up with him the way he is; and doesn't realize what a living hell being with her can be like. Good luck guy; I hope nothing I just said is true.


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17 Jul 2012, 8:24 pm

InThisTogether wrote:
Rationally, yes. But when your kid is in distress and it is distressing you, sometimes you do not act rationally. Especially if you honestly do not understand where they are coming from. The idea that slight pressure could cause unbearable pain is something that is very difficult to understand for most people, I would imagine.

And sometimes kids do claim things that aren't true in order to try to get out of doing something that they do not want to do. So sometimes it is not a matter of denying someone's feelings, but rather a matter of calling their bluff. And sometimes when kids are scared, their perception of pain gets skewed and they need to be calmed and reassured. And sometimes what a kid is communicating is not actual pain, but fear of feeling pain. Anticipatory pain. Which can be lessened by reassuring that it doesn't hurt.

Things are rarely as simple as they seem on the surface. And being NT does not make someone an infallible interpreter of the experiences of others, ykwim? And naming someone a liar because they failed to understand something does not seem like it was helpful to anyone.


I agree completely. I note that my son frequently calls me a liar when he misunderstood what I said, rather than accepting that there was a misunderstanding.

I do think, genuinely, expressing to your wife that certain things actually hurt someone with sensory sensitivities, and I think your analogy about the knife is apt: it would never occur to someone who doesn't suffer from them that this could be the reason. While I can't blame you for getting upset in an emergency situation, at some point when things are calmer, you might want to calmly explain to your wife how certain things affect you and your daughter differently than other people, and that sensory issues don't just "disappear" if you "ignore them," which is a commonly-held belief. Maybe refer her to some literature or websites on the subject.



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17 Jul 2012, 8:30 pm

InThisTogether wrote:
Anticipatory pain. Which can be lessened by reassuring that it doesn't hurt.

But if the kid says it is hurting that is different than saying that it won't. Although, if it's going to hurt it's better to say that it will; let the kid brace himself.

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And being NT does not make someone an infallible interpreter of the experiences of others.

I don't think anyone is. All we have to go on is observation and communication.



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17 Jul 2012, 8:47 pm

Ann2011 wrote:
InThisTogether wrote:
Anticipatory pain. Which can be lessened by reassuring that it doesn't hurt.

But if the kid says it is hurting that is different than saying that it won't.


Not always. For my kids, sometimes they will complain of pain if they rationally conclude that something will hurt. And I think they do experience pain, until you reassure them that it doesn't. Then they stop to think about it and realize that it doesn't. An example of this for my son was a blood pressure cuff. When he was younger, he would become very upset and repeatedly state that it hurt. However, through reassurance we calmed him down and he said "Oh, I guess it really doesn't hurt. I just thought it did." I can think of numerous examples like this for my kids. Heck. I can even think of examples for me. One time I had to get sutures removed and I was so convinced that it was going to hurt that I nearly had myself in a panic. They only touched a suture and I felt pain, so I left, sutures intact. When I got home and I was able to calm myself down, I had a nurse friend remove them and I was actually surprised to realize that it didn't hurt at all. My anticipation of pain was what was causing the experience of pain. Because I can tell you, when they touched my suture at the office, I felt pain.

Ann2011 wrote:
Although, if it's going to hurt it's better to say that it will; let the kid brace himself.


I actually think it depends upon the person. With my son, I am much better off just telling him something will hurt. With my daughter, if I tell her something will hurt it heightens her experience of pain and she can become inconsolable and go quickly into meltdown mode just thinking about it. With her, she is much better off with no warning. The funny thing is, when she was a toddler, her lack of response to pain was one of the things that cued her pediatrician into the fact that something was different about her. Nothing hurt her then. Or if it did, she didn't respond to it.



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17 Jul 2012, 8:49 pm

InThisTogether wrote:
This is one of those times when I am not sure how to put into words what I am thinking. I hope everyone can understand that I am a respectful person and do not mean to ruffle any feathers.

First of all, I agree with you that sometimes parents do not do a good job of understanding things from their kid's point of view. And that is not just autistic kids. We have a tendency to overlay things with our adult cognition and our adult understandings, both of which are relatively irrelevant to a kid. I remember numerous examples of things that my parents told me when I was a kid that made absolutely no sense to me as a kid, but which now are completely reasonable from my perspective as a adult.

But the point that I do want to make, because I think there was one statement that you made that was unfair, is that your wife was not "lying" to your daughter. To lie is to intentionally tell an untruth. In your wife's understanding, it did not hurt. Because for most people--probably your wife included, the oximeter would not hurt. To accuse a parent of lying to their child when--in fact--what was happening was simple ignorance, is hurtful. Especially in front of the child. Because now instead of your child thinking "my mommy does not understand," she is thinking "my mommy lied to me." You may have very well caused damage to your daughter and wife's relationship, or at least to your daughter's view of your wife. If you persist in saying things like that, it is almost certain that you will.

I know you were probably caught up in the heat of the moment--I get that--but a more helpful response would have just been the part where you told her that to your daughter, it does hurt and then maybe telling her what she could do to help. As a mother, there is almost nothing more distressing than seeing your kid in distress. It brings out feelings of helplessness and despair. Your wife would not be the first mother to say the wrong thing when her only intent was to somehow make things better.

I do appreciate the reminder that we have to look at things from our kids' perspectives and not just our own. But as a mother, your admittance that you told your daughter that her mother lied to her was just too much for me not to comment on. For someone who has little knowledge of, or only rudimentary understanding of, sensory issues, the idea that an oximeter hurts is difficult to fathom. Because for the vast majority of people, it doesn't hurt. At all. She was not lying. She just didn't understand.


I totally agree with this, especially the part in bold.



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17 Jul 2012, 8:54 pm

Aharon wrote:
I don't think this is the first time his wife has sounded like this. She's probably said stuff like that to him too; totally stomped on him just because she doesn't understand and thinks he's just full of beans, he's pathetic, lazy, worthless, and they're daughter's the same way because he convinced her to be that way. After all if it doesn't hurt them, they can't conceive how it could POSSIBLY hurt anyone else. Amazing.

People like that are the ones you tell you are autistic and they say,"well, we're all autistic, in one way or another." wow.

The best part is, she probably feels like its such a burden to put up with him the way he is; and doesn't realize what a living hell being with her can be like. Good luck guy; I hope nothing I just said is true.


Gosh. I didn't get any of this from his post. Not any of it. Not a hint of her stomping on him, calling him pathetic or worthless, none of it. And I am not sure how one could conclude from this post that she is someone who would say we are all autistic, nor that she feels it is a burden to put up with him. What I read is two parents in a difficult and tense situation related to health problems in their child, which is stressful for anyone, and how one person responded in an unhelpful manner (the wife) and the other parent (the father) sharing this experience to try to remind us parents to look at our kids' experiences through their eyes/neurology, not our own.

Granted, I have not been around that long and am having an exceptionally hard time getting to "know" anyone because there are so many people here, so it is possible that this is an ongoing theme...but heck...I didn't pick up any of what you said.



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17 Jul 2012, 8:54 pm

InThisTogether wrote:
They only touched a suture and I felt pain, so I left, sutures intact. When I got home and I was able to calm myself down, I had a nurse friend remove them and I was actually surprised to realize that it didn't hurt at all.

Stress does intensify pain; I've had that experience too.



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17 Jul 2012, 10:05 pm

I've started working in emergency medicine, so I want to say something on this.

It's not intended to be a lie in terms of hurting someone, it's trying to calm them down.

If someone just got cut out of a car wreck and their mom is badly injured and a bunch of people are working on her with all kinds of scary looking tools, lights flashing, people running around and yelling, the images of the accident in the kids mind, and now we need to open an IV.

If the kid asks "will it hurt?" is it really appropriate with all that stress to say "Yes, very much."

Yes, letter of the law, it's a lie but if it calms the kid down enough to let the procedure happen, is it really bad?