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!

Monday, November 19, 2012

I Am Not Independent.

This post is meant to be a quick partner piece to Amy Sequenzia's excellent questioning and reframing of independence.  I will get back to answering questions very, very soon, because that is important, and I want to do it well (when I am altogether), but my spoons seem to have all been in the dishwasher of late.  Sorry about that.  So.

I am not independent and I am good with that, now.  There have been times in my life when I have succumbed to society's peer pressure that what makes a human a human is to have independence.  These have been the worst times in my life.  Being homeless, sucky.  You don't know when to eat or drink or sleep because of what time is it and that makes you super sick? Non awesome. You finally get around to matter-of-factly telling the doctor your pain is almost intolerable (when you have a rather high pain threshold to start with) and you didn't know that was supposed to be accompanied by a swan song hyper Shakespearean death scene to get noticed so therefore you basically didn't say anything as far as the doctor is concerned, suckier.  You shrug that off because, hey, you need to be  independent--and it turns out that decision almost kills you because your tumors are going to make your innards septic or something...what is the equivalent of "priceless" on the suckiness spectrum?

I am a human being, not a human doing, not a human island.  I am interdependent.  So I need help with some things, OK maybe a lot of things.  Also, I am helpful and worthwhile to others in some other things, because that is the real meaning of life.  Even if I just make someone smile to look at me, that's me being of worth to that person.  We as a society really need to get off this "Everyone Needs to Be Totally Independent or The World Will Crash and Lives Will Be Ruined" kick, now, because it is hurting people like me, like the kid I was, and it is hurting people like my parents when they were younger, twisting their hands and guts with fear of what would become of me.  I think it is likely hurting the person reading this.  I send you love.

Here is what has become of me.  When I finally stopped using all my spoons trying to be what I considered "independent," and let myself be part of the world, and let myself ask for help, I got my life back, I got to be who I am.  I am happy and successful.  Why should I have to be able to do everything all by myself?  Who does that?  It is only disabled people who are really supposed to be that much of a super hero.  When stars or wealthy people have helpers, I guess that's randomly OK.  Nobody thinks that they are not "independent" and hence not really people.

So I am a happy, successful, interdependent person who cannot survive without a little help (OK maybe a lot) from my friends.  And family.  You know who you are.  Thank you so much.  :)

This message goes out there to all the youth who are knocking themselves out trying to make it look easy, not asking for help, floundering, and to all the parents who can't sleep wondering what will happen after... There's friends and more found-family.  The world of humans is a tribal world.  Independence is not the key.  Healthy, self-determined and well-chosen interdependence is where it's at.  It took me so long to learn that I want to announce it before I forget and it takes everyone else so many long hard painful times.

Thanks for listening.

Next, back to your questions, like I'm supposed to.  Thanks for your patience.

Love, Ib

Monday, November 5, 2012

Autism and "Time Agnosia"

Time is a pretend thing.  I am supposed to have “time agnosia,” but I think I would prefer to say I am an achronist.  As atheists are to God, I am to time.  (I am not that way to God.)  But time: why do I not feel it passing the way other people do?  Not because of any deficiency in me, no!  It is because of my awareness of the fact that it is a pretend arbitrary made-up unreal thing that everyone else is accidentally in on together, unwittingly tricking each other, and I: I am like the boy in The Emperor’s New Clothes.

You can tell this is the case because of the “time change.”  Governments can tell everyone to dial the clocks back and voila!  It is now another time than it would have been.  And then they can decide to do that a couple of weeks later than they used to do it, or not, depending on the country and its needs, and then the “time zones” mesh differently.  Mmmhm.  Sure sounds real to me </sarcasm>.

Why don’t governments decide to change the weather?  (Hint: I believe the weather is real.)  Yeah, you feel me.

Thursday, November 1, 2012

Autistics Speaking Day 2012: My Ode to Dapples

                               Pied Beauty
Glory be to God for dappled things –
   For skies of couple-colour as a brinded cow;
      For rose-moles all in stipple upon trout that swim;
Fresh-firecoal chestnut-falls; finches’ wings;
   Landscape plotted and pieced – fold, fallow, and plough;
      And áll trádes, their gear and tackle and trim. 
All things counter, original, spare, strange;
   Whatever is fickle, freckled (who knows how?)
      With swift, slow; sweet, sour; adazzle, dim;
He fathers-forth whose beauty is past change:
                                Praise him.
                                                 --Gerard Manley Hopkins 

Gerard Manley Hopkins is one of my very favorite poets because he seems to get as happy as I get about things like this. Dappling, especially light dappling in my eyes, fills me with a kind of joy I cannot express properly without sort of singing about it.  And probably still not even.  But let me try now, a bit.

This is what I am talking about, a little, doing my best for now.  Walking through a fairly thick forest, and the sun comes through, and you see those things I call God Stripes because photographers always put them behind scriptural quotes.  And you walk right through that, and don't look directly, and the light changes rhythmically through your eyelid and eyelash dappledappledappledapple as the leaves go in and out of shading the sun.  Sometimes there is wind, and the rhythm is surprising, as a slip jig or some Arabic music or anacrusis, dappledappledappledapdapplepledapple.  And the light fills you with a feeling of light and lightness throughout you, you can breathe the dapple.  You can do this in a train or car with the sun at early morning or late evening.  You can do this walking by a chain link fence if you know how.  The rhythm is different, steady and more like a high-hat.  You can do it with your eyes wide open looking at a body of water as the light skims over what the wind is doing.  dadadadapppppple, ahhhhhhhhdadadadadapppppppple.  That is a lazy part of the river, but many readers maybe knew that.  Dapple on a lake on a cold windy sunny static electric day is exciting, almost like speedcore: DAPPDAPPDAPPDAPPYEAHDAPPDAPPLE.  The ocean changes its mind a lot depending on the day or time or location, like an accomplished studio band with classical training but a feel for indy and worldbeat and ironic soundtracking.

Spinning things, things that twirl, they create their own light dapple, some you twirl yourself with your hand, and you can also do the light thing with your hand alone.  You can make this thing happen with your eye that fills your body with that kind of delight just by spinning a quarter and looking at it properly.  You can sometimes put the light in your eyes by listening to something that sounds the right kind of twirly and dappled.  And your body fills up with light and warmth and a bit of a tickle, but not a horrible tickle, it is a good tickle, a tickle like love, a reminder of love.

In proper light like a ray of sun with floating slowly whirling dust motes, you can see wind patterns that also do this if you have space and time to watch properly.  It is rarely true in life that you have space and time to watch properly.  Sometimes, people accidentally come upon me when I am doing these things and ask me what I am thinking.  I say "nothing," but this is not the rhetorical "nothing" that people say when they just erroneously say they are thinking "nothing" because they do not want to say what they are thinking.  This is the truth in a literal sense, because the thing that I am doing is not a thing that is thinking or has cognitive content.  I am seeing, and the seeing mixes with a sort of hearing and feeling and breathing, even though the hearing is not a listening hearing, and comes only from the seeing, often.

I am being.  I am being happy.  I am being light and love and joy.  Glory be to God for dappled things, and also to Him thanks for giving me the gift of being able to notice them as they are.