Friday, November 30, 2012

"It Hurts My Ears" Part One

Hi! I have a question for you (well 2, but they are related). I have a 3.5 year old son. He was diagnosed at 16 months. He is verbal and is getting pretty good at communicating his needs. He loves cooking shows, being sung to, Fancy Nancy books, Sesame Street, and the color pink. We're having a couple of issues with sound now, for lack of a better way to phrase it, and I'd love your insight.

The first is that while he's getting better at letting me know when a sound is too loud for him (for example, he cried and asked for his headphones at a recent party; we took him outside to have space), he is also using the phrase "it hurts my ears" whenever he doesn't get his way. He wants to listen to a CD instead of the radio? "It hurts my ears!" Wants a different show on TV? Gets reprimanded for breaking a rule? "It hurts my ears!" Sometimes it's hard to tell whether something really IS causing him pain (as I'm sure that party did) and what is him saying he is upset he didn't get his way. How can I tell the difference? How can I help him see that he can't use this phrase when he doesn't get his way? Any conversation about turn-taking usually ends up in a meltdown, so maybe there is some sort of sensory component there? I want to respect his sensory needs, but I also want to teach him how to be flexible.

The second issue is around toileting. My son is doing a GREAT job of using the toilet at home, at school, and at his therapy center. He'll use the toilet at other people's homes, too. But, he refuses to use the bathroom anywhere else and I know it's because of the noise. At first we thought maybe it was just automatic toilets or the loud hand dryers, but I've since come to realize that it's the unpredictableness of using public bathrooms. Even if we put a sticker over the automatic toilet, someone could come in the bathroom and flush *their* toilet, or use the hand dryer, or turn on the water. Do you have any suggestions for how we can help him feel more comfortable? We've tried social stories, and stickers for the toilets, but he won't go in the bathrooms at all and instead prefers to "hold it," which isn't that healthy (sometimes he'll agree to putting on a diaper). I don't really care if he stays in a diaper for awhile (learning to use the toilet can happen on his schedule, not mine), but it makes me sad that this is so anxiety causing for him.

Thank you!

~ Q

Dear Q, 

Excellent and interesting questions, and I can relate to the little guy on both, so I may be able to help get in there and get at it with them.  The way I see it now as an adult with a lot of experience in the world and theater training and all of that to help me talk about emotions and things, the actual nature of the problems might be less related than they seem to him and therefore to you.  I'll talk a little about why I think that which will explain why I'm answering in two installments but first let me say it is a giant credit to you that you see them as related based on the fact that he does, because that is an Awesome Parent Attribute. 

Incidental information, eerily on-topic: a lot of times when groups of Autistics get together, we express applause by raising our hands and "flapping," which frankly looks a lot like Jazz Hands if there was a little happy punk rock aspect added rather than the musical equivalent being smoothly jazzy (want to make sure to paint the right tonal word-picture here) or also ASL applause, higher in the air and pretty boisterous.  We do this so those of us with sensitive ears don't have to get that ear-burst of clap-thunder, which isn't really that rewarding if it hurts.

So that explains this:  Flaps to your Attributes! Listening, trust, respect, viewing the world together with your children...

Now down to business.

I think the issue in the first paragraph has to do actually with internal and external communication and the second issue is totally sensory, and the answers are different on what to really do with that, so I'll talk about the first thing today and the second thing in the next installment.

My sense is that rather than saying "It hurts my ears" to sort of get his way, the answer to the mystery is more like this: your son thinks "It hurts my ears" kind of means "Woe is me, this is heinous."  I mean it may not be like he completely thinks that is what it means when he is feeling great and going on full powers, but when things get egregious, emotive communication can be the first thing to go.  Also, since he is so young, he might actually think that all different variants of life being unbearable are really sort of the same thing, that really are best expressed by "It hurts my ears."

In essence I think what needs to happen isn't materially that he needs to see that he can't just use that phrase to get his own way...

Another hopefully useful side note.  All of my life I have been either baffled or maddened or hilarified (I know, not a word, but it's a thing; you know it is) by the situation of people telling me I cannot do something I just did.  Clearly, I just did it, meaning it is within the realm of possibility so kind of by definition I can... I now recognize that this is a "smart remark" which is not particularly valuable or to be desired in the real worlds or ordinary conversation but I want to share it with everyone's parents because I suspect people are accidentally telling their kids they can't do things right after they just did them and finding this tactic to be wildly unsuccessful.  As an adult, I know that people who say "you can't x" are trying to express "x is not allowed in polite society" or "I forbid x" or "do not x" or "x is against the rules" or "no dang x-ing!" or the like.  But I think as a youngster I was too derailed by the fact of what was actually said and how true I thought it wasn't to focus on what was meant to be expressed, pretty much ever.  I am not making fun of anyone here who says "can't;" I just want you to know what there is a chance your little ones might be thinking or hearing or having happen in their heads while you are trying to talk to them.

So in essence I think what actually needs to happen for him on this has two prongs.  First, I'm not sure he really knows the difference between what is hurting his ears and what is hurting his need for order, or thirst for predictability, or feelings.  In terms of his feelings, the details of those are even more complex and difficult to process.  It will probably take a long time to teach him to get really good at sorting out his feelings, and expressing them.  But he can express his needs and wants in a way that is closer to socially understandable, and this is the second prong, that I think you can see progress in quicker.

Myself, I had a situation of being terrible at sorting and expressing particular emotional details which I now know is called "alexithymia" and can often happen to people who are otherwise verbally fluent, which sadly makes it seem like they are being withholding or ornery or some other thing.  This used to cause great distress to people who were close to me before I learned about it.  Now as a kid, for example, I think my theory about everything I "couldn't do" was "I can't breathe" and I think when I became unable to go to high school I tried to be more expressive about that by adding the reason "There are no windows."  Of course now I can see this is not a really accurate rendition of what was going on with me at the time, and not at all up to par with the rest of my verbal-expressive range, but that was the best I could do.  My own detailed learning about emotional expression came later in life (twenties) but I think it's a great idea to do what you can as early as possible.  I know my parents did what they could, though.  It just really is a problem.  For me, theater was extremely valuable as a learning platform.

Even now, I have a verbal habit of saying things "hurt my feelings" now that I have learned that this is more likely to be be closer to accurate, when in reality it's sort of the complementary to what you are experiencing with your son.  I might say, "Mind if I switch the lighting? It's hurting my feelings."  Now, wait, you're closer to right than I thought.  I am using shorthand and getting my signals mixed because of sensory reasons messing up my emotional-expression learnedness.  Interesting.  Anyway, the lighting isn't hurting my feelings, not in the proper idiomatic usage, it's hurting my senses.  But I am saying ACK.  Probably, "You can't x" is really also ACK.  People could just say ACK to each other and save time....

In the shorter term, he could learn that some other phrases cause you to notice his distress and save him from nightmare land.  I think he will be attracted to the concepts of accuracy first and then precision more and more as he gets older.  I suggest a good substitute to use right now is "It's bothering me."  That way, it will be true of all the bothersome things.  I think if you hear him saying something is hurting his ears that is patently non-sonic you might consistently respond with "x is not on/in your ears. Is it bothering you?"  So probably "Time for bed." "It's hurting my ears!" "Your bed is not in your ears.  Is it bothering you?"  And if it is potentially to do with his ears, and that seems likely, you can also show him that ear-hurt is a bother, by saying "It's hurting your ears? Is it bothering you?" (I don't think you should say "It's hurting your ears? Is it bothering you?" unless the ears are a likely culprit, because when you help him focus on the things that are not actually on or in his ears for real, I think you are getting him started on sorting things out.  Also, if you know what it is the real culprit, or you might, you could suggest that, especially to help him in conversing about it after he says yes! to the question of bother.)

Two things will hopefully happen, and I think are very likely to happen.  1. He will engage in some conversation practice about it and give you info that may lead to more introspection you can help him with; 2. He will notice that you find the concept of things bothering him to be an engaging and relevant point of discussion and will switch to "It's bothering me" for the default instead of "It's hurting my ears."  If he has any echolalic tendencies you can help the second one along with rhythm and repetition, as in "It's bothering you?" (just the way he would say it) and then he says "It's bothering me" and then you say with concern and Parental Magic Fixitness spicing it up but in the same rhythm "Aw, it's bothering you" and then hug him or sing the special song or do the thing that makes him feel Parental Magic Fixitness in his world has occurred.

The only glitch about the above is that in order to make the above linguistic change stick, you kind of have to give him his own way more than otherwise for a while, when he expresses himself by being bothered instead of having his ears leading the charge of everything.  This is temporary.  You do not have to give him his way forever just because he says things bother him.  I advocate for kids in my tribe, but, you know, not to that extent!  ;)

Meanwhile, I will try to help with some things to help him learn to desensitize his ears a bit for real, and ways you can do that with him since he is so young, that have worked for me.  I can actually make my ears less sensitive if I have a heads up to do it, which is incredibly useful in life.  And also with general desensitizing to particular sound ranges and startles and things which I'll talk about next time, knowing how to do this is super useful.  I will also talk about using it in terms of turn-taking meltdowns, because talking about things you don't get when you are sort of done being able to hear about it feels like a sensory issue, it really does.  So maybe there can be a part three about feeling sorting (note that "feel" is both a sensory and an emotional word, which makes me feel sort of vindicated about getting my body and emotional self mixed up all my life) but I think he is so young, and what I will really say about that now is think about theater games and look to see if there are local places he can go for that.  So look for part two.  Hope you liked Part One.  Let me know how it goes!


  1. Wow! I love this. My kids are older now (11 and 8) so they are getting better at telling me what is going on, but this would have been SO useful a few years ago.
    I think you are right, that at 3 1/2 this little guy just doesn't have enough vocabulary and awareness to really explain what is wrong. He has learning "that hurts my ears" gets him the help he needs, so he says it when he is going ACK (love that, by the way). I just think it is incredible that he uses that rather than just simply withdrawing, screaming, throwing things, etc. Given more vocabulary, I think this kid is going to do a great job advocating for himself.

    As far as the bathrooms, one suggestion is that more and more places have family bathrooms available. This would give him something that seems much more like a bathroom at home rather than a large room full of unpredictable noises. Store bathrooms tend to be very bright and noisy (both from a lot going on and the sound bounces off all the hard surfaces) with strange smells (cleaners, hand soap, etc.). They can be a nightmare with sensory issues. It sounds like you already know to be aware of self-flush toilets and hand dryers. Awesome! I would find some places with family bathrooms and try those out. Make sure you carry some paper towels and hand soap if he has problems with the dryers or the different soaps. I am very sensitive to strange soaps, so that is one reason I don't like public bathrooms.
    You are doing an amazing job being aware of your son's needs. Good luck!

  2. Yeah Whoever that is a genius good point! Target is awesome for this reason among others. Family bathrooms rock! Also places with one-er bathrooms like Walgreens, which excels for other reasons too such as I posted on FB :D