Saturday, December 29, 2012

I Was A Self-Loathing FC Skeptic

You can read in Loud Hands: Autistic People, Speaking about the shall-remain-nameless professor who said in front of me and many others in graduate school that autistics did not know what it was like to be themselves because they had no theory of mind, so one had to read research about them done by others in order to understand them at all, (which presumably if you were one of them, you never could anyway--this part is logically editorialized by me).

There was another professor who said in a large class of aspiring special education and psychology researchers, "Except for Grace, the idiot savant, who doesn't count," because I recalled more than seven allegedly random numbers which were not actually random, but had a clear pattern, and he hadn't told me ahead of time that the object of the exercise was to demonstrate that nobody can recall more than seven random things in short term memory.

Those two professors I mostly steered clear of.  A third one, I trusted, because he seemed lovely.  He told me that facilitated communication (FC) was a dangerous non-scientific fad which co-opted people's voice and autonomy, and we, as scientist-practitioners, had to reject such nonsense, even though we should still go to TASH, where some people believed in silly things.  He acted as if he meant this nobly, and so I believed him.  But I still didn't quite feel safe enough to tell him who I was, that his colleague had hit the nail on the head with the completely inappropriate joke of "idiot savant."

My graduate university is famous for its brilliant education program, which runs several of its own conferences, and from which one can get a job even in an economic downturn.  I was well-trained in several kinds of sciencey goodness by some seriously important people.  I kept my hands in my pockets all the time and made sure nobody ever came to my apartment while making a big giant show of becoming elected President of the student association to demonstrate my ever-loving sociable respectability.

I spent almost all my spoons, and became quite ill in the process, but at least I learned really important scientific academic things, like how to be patriarchally condescending toward my fellow Autistics, "protecting" them from themselves while I secretly cowered in the migraine-inducing limelight, doing whatever I could to avoid exposing my need for shade and quiet and peace.  (I also learned really amazing actually useful things, such as see link below.)

So when you hear me now, as you will hear me now, defending people whose voices are made manifest by typing, you should know that I am not a scientific naif.  Here is what happened: I met many people who communicate by typing (as I often do myself) and found out from them what their life experiences were.  In epistemological terms, this is sometimes called phenomenological knowledge, or to put it more idiomatically, getting it from the horse's mouth.  I consider its warrant stronger than that of many of the quasi- and experimental studies that have been used to devoice those who are non-speaking, because of the question of goodness-of-fit.  In other words, I am a person who has been carefully trained to understand what various kinds of research studies are able to show and not show, and here is an excellent book I was lucky enough to help edit for the top ed research organization about just that topic, if you are interested in delving more deeply into it for yourself.

And it is because of this that I have changed my mind and attitudes about the breadth of communication choices of people whose way of communicating is through typing, even if they are not yet entirely independent with it.  In other words, you can tell me all about FC being 'unscientific,' but know this is something I've thought about long and deeply, and I will likely answer you in graphic detail about ethnography, phenomenology, epistemology, knowledge warrant, and patriarchalist colonialism.  I can do this for a very long time, because I was once like you are, if you are like I once was.

Thanks for listening.


Tuesday, December 11, 2012

I Am A Mother.

Layenie, my wife, is a pediatric nurse.  In the US, RNs are trained to be proficient at all kinds of nursing and prepared for whatever comes up.  In the UK, where she was first educated in the nursing profession, candidates must choose a field of specialization, and Layenie chose pediatrics.  Consequently I feel very comfortable asking her questions about the health and development of our young sons.  They will turn one in January and are ahhh they are soooo adorable.  You can see them on my profile here, and another pic on the Tiny Grace Notes Facebook Community, and a ton of pics on my own FB page, oh and you can see Layenie on my Twitter... but I digress.  I might be digressing because the beginning of this post hurts a little to say.

It was the other evening, and I had been staying home with the boys, which I do once a week, because, you know, child care costs a lot, and also, as I said, adorable. Benjy was doing this thing with his hand which is very like something I also do with my own hand, so this is what I said, and although I am not usually able to hear myself, I can derive a proper quote from the ensuing conversation:

Ib: "See what Benjy's doing with his hand there....Is that OK?"

Layenie: "Yes, he's learning to wave, which is developmentally--wait. Wait a minute. Of course it's OK. Even if he's doing it just for fun or because it feels good, it's going to be OK, OK? You do things like that, and you're OK. Does it ruin your life?"

Ib: "Well..." (I was thinking about the past, about the hard things, about the things I didn't want my boy to have to live through, like school, if he is like me.)

Layenie: (As if she could hear the inside of my head, rapidly changing the scenery--) "How 'bout now? Does it ruin your life now?"

Ib: (Contemplating the Now, beaming, andd..... there goes my flappy hand) "No. My life is awesome."

Layenie: "I love your hands and I love you." (This made me cry tears of joy, and made me think.)

Then she carried on doing what she was doing with the kids but I went inside my own head a bit and crawled all over myself: hypocrite much? Would I have wanted to silence Benjy's hands? No. I am not a hypocrite, I just wanted to help him gird his loins, if necessary, for the slings and arrows of-- but then I thought about it some more-- a world that is largely not the same as it was. The world is better now.  It really actually is, and it is moving in the right direction.

Not that it is easy now.  Now, we are called burdens and a crisis and a national epidemic. Horrible "schools" still need to be closed yet and children are being killed to this day as a result of the way we are portrayed. But people are starting to protest this, people's mothers are starting to notice and say Hey: stop talking about my baby like that, I'm talking to you: stop it right now. And they are going to have to listen. And we are saying it and we are typing it and we are even getting into Washington DC and on TV and saying Hey: stop talking about us like that, I'm talking to you: stop it right now.  And they are going to have to listen. And things will change even more. Autistics and our families TOGETHER.

When I was in school, we were called nothing, we were nowhere, we were hidden in institutions, a mystery, something to be very afraid of. Violent, "idiot savants" (I have actually been called "idiot savant" to my face in front of a room full of people) and "morons" and "mentally retarded with autistic features" (I am sorry for the language but I have read so much of this language in the historical files of my friends). Any "refrigerator mother" who was defiant or foolish enough to keep us out of institutions deserved what she got and there weren't enough of those to get us on protected lists or legal classifications or parent to parent support networks. Our mothers, forever at fault, had no way to find each other, and every reason to hide themselves in shame trying to rebuild their lives, since most of them would never see their children again.  For those who kept their children against all odds, they needed support even more, but where to find it? Probably we would become homelessness statistics and end up in jails if we could talk; and if we couldn't, the protection people would put us in institutions anyway and arrest the alleged "refrigerator mothers" who had tried to keep us out, if they were poor, or make them poor, if they had financial means.

The world changes slowly, but it changes, and I am celebrating that, today. If Benjy does his hands like that because he is stimming, if JoJo rocks because he rocks like I rock, may the world keep moving into the world I want it to be for him. May I be tireless in helping to see this happen.

I am a mother.  I know what the depth of this prayer feels like.

Thanks for listening, and thanks to all who pray and enact it with me.


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.

Tuesday, October 30, 2012

Sensory and Executive Function Barriers Are as Real as Concrete

Hi, I don't know if this is the right place to ask a new question, but it was the only comment box I found. Thank you so much for being willing to share your experience and knowledge! My question is very different from the previous one. My son, just turned 16, was dx'd "Asperger's" just over 3 years ago when hospitalized for depression and escalating behavior. (He was always labelled "gifted" and "ADHD", and in mainstream public school, with gradually worsening social experiences, compliance, and acting out behavior.) After the ASD diagnosis, things started improving as we learned what his needs were, but since he started high school he is gradually getting worse - school refusal, putting his head down on the desk, decreased cooperation at home, increased stimming and meltdowns (I have a fresh hole in my wall). At a recent IEP meeting, he told the 18 adults at the table that he'd done better in the one ESE class he'd been in (learning strategies), because it was "smaller, quieter and more individualized." The IEP staffing specialist told him flatly that this was impossible for them to provide him. They produced a behavior plan requiring a certain amount of work in order for him to have his full time at lunch with his friends. I asked what they would do to meet his sensory needs, and they looked at me like I was crazy. I mentioned the quiet office with the upholstered chair that he used to be able to go to sometimes in middle school, and they said I was trying to move him backwards. They also said that his behavior was more defiance than whatever else I'm trying to think it might be (despondency, perhaps?)

I kind of had my own meltdown at the meeting and we rescheduled the meeting to finish up next week. Predictably, my son is now on strike and has done even less work in school. I was wishing so hard for an autistic adult to ask for advice, and here you are! I know you don't know my son, but can you tell me anything you are pretty sure I should ask for at the meeting? We have accommodations of less handwriting and note taking, teachers email me daily to help me keep up with his assignments, and he has an extra day to turn work in if needed.

Sorry this is so long, and thanks for listening!


Good questions and familiar to me in my life, Carol. When is the meeting?

The next meeting date hasn't been finalized yet, but the deadline is Nov. 3. 

Dear Carol, 

I will definitely write back in plenty of time so you will feel maximally ready for the meeting. Also, I'll talk to my mom (Hi Mom, I know you are already reading this!) and see if she also has any extra additional advice to add for what you should say that she remembers from this time in our lives.As a preview, they don't really have the legal right to ignore you and act like you are crazy and all of that. As his parent you are someone they need to really be listening to and taking notes and following your lead. This is actually the way the laws are set up, and don't let their attitudes fool you. I am very sorry these particular ones are copping an attitude, but I am happy to report that truth that when you go back into that meeting you can go in there with the new knowledge that you and your son together really have the right to OWN it. And if you are on the same page you can do a double-team SUPER OWN.OK, I will write more soon, but think about that and for now, talk to him and ask him what would be his super dream outcome if I am right about you and him OWNING the next meeting, and see what you can come up with. Make a list. This list is going to be realer than you think. 

Best, Ib 

Thank you! He and I will have a confab. I think that part of the problem is that he is so smart, and often contributes good comments in class, so no one believes that when he puts his head down he isn't just being lazy. This is complicated by the fact that like most teens, he CAN be lazy. They also have never qualified him for ESE under the autism label, but rather under ADHD....their evaluations didn't reveal autism as having an educational impact. And, regardless of label, they observe that sometimes he can perform, so they seem to expect that he will always do so. He is also depressed and recently started therapy, and is on meds (which I hate) because his meltdowns were getting scary...I truly believe that if schol were less sressful he wouldn't need so much medicating. I'd homeschool him, but I can't quit work. 

The next meeting is set for Nov. first. So far all our requests are simple, like having one day a week to turn in all work to one person (executive functioning being a big issue), and accessing any online assignments at school, to reduce the number of modalities he has to remember to use at home. Thanks again for your generous spirit. And may I add, I've been reading your older posts and I love love love your writing! 

Dear Carol,
First off, thanks so much for that compliment :)  I am blushing :) :) :).  I am what they call a "reluctant writer," and your encouragement means sooooo much to me. So I talked to my Mom, and just as I suspected, you are doing a bang-up job.  Those were her exact words.  She says hang in there.  Your story made her laugh with bittersweet recognition because that is so much like hers and my teenager story.  Times ahead may be a bit rough (she said to add "er, say 'very rough'") but you are doing everything right, and I was let's just say a little on the difficult side at this age, and I am not going to let Mom add anything here in case it is more dramatic than that, but suffice it to say check out how I am doing now if you are in the mood for some Happy Hope, Marty McFly style.  This is not to be confused with myself bragging in front of any naysayer high school teachers and administration from the past who may or may not be reading this and were misinformed back in the day and not helpful and tried to ignore my parents and act like they were crazy, if ever there were any such people, which if there were, I'm sure they are not related or bearing any resemblance to anyone actually alive or living they may resemble, but rather are embodied by actors, and not to be copied and played on your DVD for financial gain or otherwise without express written permission of the FBI or MGM.  Disclaimer accomplished.  

OK so: I will tell you why you are doing everything right from both of our perspectives, and give you a little more information about your rights and some hopefully helpful analogies you can use to get people you are talking to, to be able to understand things better in real life. 

When I was extremely similar to your kid, the protections under the law did not extend to situations like ours, because it was such a long time ago and people like us were not so famous that people knew the names and listed them under the IDEA Categories and so forth.  ;).  You have that advantage now and I am going to help you use it.  When you have rights, by golly, work them. 

But before I do that I want to give you a major cyber fist bump of another thing that makes you awesome.  You mention that your son CAN be lazy.  The reason this is so awesome to me is that it shows how much you totally see him as a complete person.  Not he IS lazy, that or a no-hoper and can't do one darn thing of his own ever because he is a giant walking disability of tragic proportions, and also not that he is a super angel of otherworldly inspiration, bathed in the blue light of the mysterious puzzle piece of our dreamy-eyed kind.  He's a kid, your son, you get him.  And I really, really love that.  You do not dehumanize him in any direction.  And though he probably treats you a little on the heinous-rude-not-thoughtful side sometimes, because he is a teenager and that is what teenagers may have a tendency to do, I just want to report to you from the future that he will notice that you have not dehumanized him, he is likely secretly noticing now, unbeknownst to either of you, and he will remember, and it is making an important difference in the way he sees himself and what he can become.  Just hold that knowledge in your head and in your heart because it is going to come in handy in time to come. 

Just a break for station identification.  I really love the people who write in to this blog.  You folks make my day.  I wonder if there is a secret subtitle that I'd forgotten having put on there that says something like Blog for Awesome People to Ask Questions.  OK, back to your regularly scheduled programming. 

Autism has an educational impact.  Sensory issues have an educational impact.  Executive function barriers are barriers.  You are right about all that. 

Sometimes well-meaning people who think in a very linear way about "progress" in learning do not know these things, and you can help them, because your ideas are right on the money.  I am going to speak from analogy about what your story sounded like to me, using substitution of precisely related concepts, and you can tell people this, because it might help them see what we are up against here.  I will not go totally echolalic, but will get very very close, only just make it shorter and stick to the most salient ultra shocking part.  Here goes: 

Analogy Carolmom: My son, who uses a wheelchair for all locomotion, just started in high school, and has been having severe attendance issues.  Middle school was a lot better once they became ADA compliant and installed the right ramps and all of that.  He just told the 18 adults at the IEP meeting that classes in middle school were easier for him to attend as they were on the first floor instead of up two flights of stairs and thus it was "possible to get into the room".  When I as his mother suggested perhaps they could fix the elevator, if the first floor was not an option, they acted like I was crazy and flatly said all of that was impossible and I was trying to move him backwards.  They say he is defiant.  He never attends class, and for some reason seems to have given up, even at home (perhaps become despondent?).  What can I do? 

Me: They said what the whattin' what?!? 

Sensory and executive function barriers to learning are barriers to learning, and people do not have them on purpose in order to be defiant.  It is not fun to have them.  The reason we have special educational protections under the IDEA is so that teams can get together and provide accommodations and modifications to remove barriers to learning and allow students to access the curriculum.  If the barrier is physical, accommodations will address that.  Neurological barriers are sort of physical, by the way.  Brain scientists can locate a lot of that stuff.  My friend Judy Willis, MD, who does not focus on autism but is one of the most knowledgeable and fascinating people you will ever meet, is both a neurologist and a teacher.  Check out her studies and see what all they can know.  For one thing, separate issue, but related, you can learn and retain a lot more when you are pairing it with a positive affect instead of living out a nightmare situation.  I learned that from Judy (we were in the same writer's group at SCWriP which is part of the National Writing Project and extremely cool). 

Here is another important aspect I noticed about your story, Carol.  Your son is already an excellent self-advocate.  However, he was, as you were, blatantly ignored by a giant room full of people.  This is liable to contribute to despondency.  I still hate it when it happens to me, and have to fight against the idea that it is not worth it.  There are still ableists and jackwagons in academia, believe it or not, even in my field.  Of course I am sure any resemblance between them and anyone living or dead is entirely coincidental and the FBI, etc.... But he and you should continue speaking the truth, because you are right about it.  And it IS worth it.  It is.  Tell him I told you.  It gets better when you get older.  It doesn't get gone, but it gets better.  You get more powerful and can sort of make people listen more, more of the time.  And you can help make people listen to others.  It is worth it. 

Autism does have an effect on academic work, particularly because of sensory and executive functioning barriers.  Yes it does.  But not in all cases, and not all the time, and not if it is well-managed and provided for with accommodations and modifications allowing access to the curriculum, as ramps and elevators do with wheelchairs.  When quiet spaces and safe zones and plans B and executive functioning supports and simplification scaffolds are not provided.... well, here is something that happened to me just this morning.  They are supposed to tell me ahead of time if there is going to be a fire drill during class or office hours, so I can adjust (dull) my senses in anticipation (this falls under a "Plan B" because there will be fire drills no matter what, but I do have the ability to create temporary sensory dullness in myself with sufficient forewarning.  Many of us do).  Because of staff changes, this warning unfortunately didn't happen at all, so giant riotous unexpected piercing intolerable mind-ruining klaxons went off right in the middle of what was previously a math pedagogy class, with me surprised at full supersensitive ultrahearing.  Gack. 

The good news is, this was a class full of people who want to be special educators, and several of them have kids on the spectrum, so they got to see a sensory meltdown in situ naturally provided by providence, and see what they could do to best help out in such a scenario.  They aced it, I am happy to say.  Next week we can have a debrief about it, etc.  But, I will just let you guess whether I was able to provide pearls of wisdom in a calm, engaging tone of confidence and linguistic command right after that happened... 

So, to make a long story short, you are asking for very good things in the realm of executive functioning.  But you and he also have every right to ask for the quiet room because, "That is impossible" is not a real answer to the request for a quiet, safe, smaller room in a normal building.  When I read that I was thinking, what is this school, a yurt?  A yurt and there are none of those pie dividers?  Because, seriously, buildings have rooms.  That is a well-known feature of buildings.  Or maybe it is like a super giant echoing warehouse that doesn't even have a bathroom or an electrical closet?  Dude.  "That is impossible"??!!??  No, it isn't.  It isn't impossible.  It is important. 

Two reasons it is important.  Reason one: it the same kind of thing as is the ramp, or the elevator.  It is the removal of the barrier that sensory over-stimulation causes to learning.  Reason two: it is not OK to stomp all over the self-advocacy efforts of a teenager.  This boy is engaged and involved.  This is actually dreamy and they should relish it.  It is the opposite of defiant.  I have never been able to hear my own self speak, but I will tell you this, I do not recall ever as a teenager being able to deliberately help adults understand me as well as your son is doing.  Myself, I was not clear on what was going on with me, and as best I can recall, I said things that would have seemed cryptic and non-useful, such as "I can't" and "There are no windows" and "It's... there's not enough music" and "I'm sorry" and possibly, if I got up the gumption to say it out loud (I have to check with my mother) "I just can't see the point."  I know that last thing was in my mind. 

Your son, miraculously, has a part of him that still sees the point.  He is trying to advocate for himself for a place at the table, for the barriers to his learning to be removed from his high school experience.  His teachers are probably well-meaning, and now, I hope, they will become well-educated.  If there are further problems please feel free to have them contact me because I believe they want what is best for him but just had a conceptual glitch about what constitutes an educational barrier for a neuro-diverse student.  If you tell them what I said here and there are further problems, I may not have expressed things sufficiently well and would be happy to try more analogies or bring up studies. 

So this is, in a nutshell, why I think that the things you have already said, in addition to the things on the list you are coming up with together, should be the things you ask for, and you should also bring up some of the things I have said in case the analogy helps get the point across that by asking for barriers to learning to be removed, you are NOT taking him backwards, you are allowing him to move forwards, and you are also supporting his efforts at self-advocacy, which is something that is valuable and always to be supported, because when you lose that, he will be ever so much more difficult, and that is probably why my Mom said "be sure to put VERY," because she was talking about me back then, and I did not self advocate properly, and that took AGES for me to get my life together as a result, because how could people help me?  Your son is not like that.  He is with you, telling people.  Right on to that! 

Best of luck to you.  I didn't want to wait until seeing the list you guys make up because I wanted you to have time to mull over this and write back if you wanted.  But if you want to write back with the list I will be very interested :). 

Best, Ib

Tuesday, October 23, 2012

Labels; Also, Intense Teaching is Realer than "Cure"

Dear Tina and Everyone, 

This is a very important and significant question or sort of set of questions, and I deeply appreciate Tina for taking the time to be so open about it and for the fact that she is  really actually asking.  So it took me a long time to think about and write about it and do my best to do it justice.  Sorry for the delay.

Below you can see some of our clarifying dialogue, and then I will go into the ideas I came up with.

I hope what my brain came up with thinking about these things is some kind of useful to someone, especially Tina and anyone with similar dilemmas or similar kids, and I would also like to invite other people to chime in with helpful ideas that are also respectful of the dialogue and all those taking part in it (multiple perspectives are interesting and useful; bullying and trolling will straight-up be removed).


I have a question. I have a severely disabled son. He is nonverbal, is still in diapers, has self harming behaviors, hits himself in the face repeatedly and eats with his hands. I doubt he will ever progress to the point of living independently. I just can't imagine that ever happening as he's already 12 years old and only in the last year has he indicated that he understands what I mean when I ask him if he wants to go outside for some fresh air. I get really tired of people saying how labels are bad. I mean when anyone sees him they get how tough it is and they use words like severe and low functioning, and they're right to, because he is. I dont' see how that's a bad thing, it's an honest thing, from my perspective. Also people who seem so dead set against labeling are either able to write down their views (something my son cannot do) or they are parents of kids who are much farther along than my son. Truthfully I don't really care about the labels, but I do feel upset when people make such a big deal about labels, when it's really clear the severe label isn't one that fits them. Also I'd like to see something that would make him able to go to the bathroom and not have to wear a diaper, use a utensil to eat his food and speak. If that's a cure, then I'll take it, if it's something else, great I'll take that. But I'm sick of everyone arguing about this stuff when they can WRITE and TALK! You seem like a reasonable person. I'd love your views on all this. Thanks.

     Dear Anonymous, thanks for writing!

     When you write back please feel free to give yourself a pretend nickname to sign off with so I can know that it is you and you will know who I am talking to when I talk to you. Thank you for the compliment of saying I seem like a reasonable person :)
Your question is interesting and very current right now. It is something I am indeed ready to talk more about and would like to think about some more. But before I do that, it is important for me to make it fit better with your family by knowing more pertinent details about your son, if you don't mind my asking. You will notice I almost always ask to know people better because I don't think what they cannot do gives me a good enough mental picture, enough to hold onto in my mind to feel like it is really possible for me to be able to talk about a person.
                So your son, what does he love? What are some things that really seem to interest him or hold his attention? Another thing that I found really fascinating is that he recently started indicating that he knows what you mean when you ask him if he wants to go outside for some fresh air. How does he indicate this? And is the answer usually yes, or no? Are there other things he indicates to you? Are there things he can't stand? Things you can predict he would gravitate toward? I would just love to hear more about him, whatever you can think of that you don't mind telling me.
      Then I will honestly tell you my thoughts on labels. And I do appreciate you taking the time to ask me about them even though I am a person who can write, and has written this: - so I will do my very best to answer well and in a balanced and nuanced way.
              All the best,

                Hi,I'm Tina. I'll tyr to answer your questions. I'm glad you asked all these questions. I dont know how many I can answer but am tyring to answer them. J likes pizza, it's the only thing he'll eat. He strips the cheese off, eats that first then licks the tomato sauce off then scrapes the soft doughy part with his teeth and leaves the outer crust and what's left of the underneath part of the pizza. Let's see what else... Okay, I think he likes being with us, his family, me, my husband and his brother, although his brother is older by two and a half years (just turned 15) and they don't play or anything. J likes Sesame street and I guess maybe Elmo. But J is really unpredictable and is becoming more and more angry and violent. He hit his brother the other day in the face. We're all a little scared of him, to be honest.The school called us and asked what they should do when he runs out of the classroom, often screaming. He also hits himself. Did I mention that already? He likes going down the slide at the playground. But mostly he wants to be alone or is angry and makes this kind of screaming noise.I know he likes going outside because he smiles when I ask him. He doesn't smile that much any more. He doesn't like it when we tell him he has to do anything, like get dressed or brush his teeth. He lets me brush his teeth but if I try to get him to do it, he starts hitting. I guess I feel sad all the time and hopeless. I'm just going to be honest with you, because I don't see how this is a good life for any human being. I mean no one would ask to be this way. No one would "choose" to be like this. I think he feels that way too. We try. We love him. We wish we could do more to help him. We wish we could communicate better with him. But it's exhausting and my husband and I both have to work, so he goes to this school and is in a classroom for Autistic kids. They say they are working on a goal of toilet training him. They've been working on that goal for awhile.Yeah. so I guess that's it.I did read that thing you wrote about your friend. It's good he has you as a friend. But really, who would choose to live like that? In a group home, dependent on other people? So yeah, when people ask, well how autistic is he, I say, severely, because what else am I suppose to say? I mean I'm not going to say well he's in diapers and hits himself and gets violent and stuff. Like I said, if there was a cure or a pill that he could take that let him have friends or be toilet trained or eat other foods or not be so angry I'd give it to him in a heart beat. I would. I don't think that make me a bad parent to want that for my son. I love him. I do. But I hate that he can't do so many things. I don't blame his "autism" or whatever, I don't even know what that means anymore. I just hate seeing him like this. Tina

Dear Tina, 

There's more than one thing going on here.  The first thing you asked about was labels like "severe" and "low-functioning," but then I think you were asking about other things like teaching, how to help him, and touching on feelings of hopelessness which are understandable especially since you are working so hard and he is smiling less now and acting more aggressive and unhappy than he was before.  But he just recently started letting you know he was happy about going outside with you, so there is light...

One of the first things that just jumps off the page at me is that throughout all the pain and confusion and desperation (and maybe even depression, though I am not a clinician, but a lot of people have depression these days and they screen you for free and when you have clinical depression and you get help for it that is one piece of extra weight that can be lifted off your shoulders, if that is you, which again I don't know, but it could be, and it might not be such a bad idea to check, just in case, why not?) you are a woman who loves her child very, very deeply.
  Love is the realest thing and it can be real in any kind of unreality or harshness or whatever.  Love holds.

The weight of the world is crushing you like flat right now, I can hear that in your voice too--but your love for your child leaps off the page in 3D relief.  That is an uncrushable thing, invincible.  It will keep you strong forever even if you don't know it.  Harry Potter's mom doesn't really die, I really think she doesn't, and can Harry Potter be destroyed? No, not in any way. Why? His mother's love.

I want to talk about teaching before I talk about labels because although labels are super important and a great thing to talk about, and I am so glad you asked about them, the fact that teaching is not the same thing as curing, which is this fakey kind of lure they hold out to tantalize people, and that teaching really exists, and better teaching can happen--I think this might be a thing that will be a thing that I want to tell you sooner because of the weight on your shoulders.  You don't have to wait for the "cure" (which is sadly likely to be more like prevention with the way they seem to be looking at things, and hence completely unlikely to be of any help to your family or anybody's family at all unless the prevention of families is considered helpful) for things to become easier and better in day to day situations.

 J's teachers are, under the law, doing something called FBA-BIPs which mean Functional Behavior Analysis/Behavior Intervention Plans.  If they are not, they need to be, because he is hurting himself and scaring you.  If they are, they may need some help doing them well, because they are not working well right now.
  (Note to other people: If you are a person who has to write FBA-BIPs and there is nobody to help you, you can also write in to the question box and I will welcome you with open arms.  Either I will find you help in your area or I will help you, but make sure I have a lot of lead time on your deadlines because chances are I will not have a fast turnaround and also the data collection I advise will also not be that fast.)

When someone has trouble communicating well, he or she is likely to "act out" the message--like in charades.  Imagine you have walked into town to get a can of petrol or gasoline in a country whose language you don't speak while your husband waits at the side of the road with the broken down car.  You suddenly notice they don't use gas pumps there.  WTF?  How are you going to get this across, what charade can you even do?  You begin to panic--wait, all you have is two US dollars.... Now imagine this is your whole life.  A good analysis of the function (or, as I prefer "meaning") of a "behavior" works to get to a translation of what the person would rather be saying instead of doing that, if only he or she could.  Another way of thinking about this that helps some people is, what would it take for me to do that? A good behavior analyst doing a FBA seriously needs to ask the kid's mother as part of the data collection consideration array, because who can interpret better?

So here is what it should look like: There are a list of things that are really important that would make J's life much better if the world knew what J was trying to say when he does that.  The teacher or consultant who is doing the FBA (with your help, or asking you to also do one) is marking down times when these things happen, with details, to get a feeling for all the surrounding events before, during, after.  A pattern should emerge, so everyone really knows what might contribute to making the "statement" occur.  

The BIP is the part where it is called a Behavior Intervention Plan.  Traditionally, this can be a token economy (bribery) etc., but shockingly, this doesn't always work the best with Autistics because they might not get the point.  What does work is getting them to buy into it for real so that they get the point and are on your team because they get that you are on their team.  They see that their life will suck less when they have a better way of being understood, because you have helped design one, and lo and behold! It actually does work a lot better.  So say like the FBA shows a pattern that J gets aggressive and loudly hits himself when he needs a break from people getting in his face making demands.  The new way he can learn, as an example, but this is one I teach a lot of, is to make the "hands up" gesture between his shoulders and ears that almost everyone can read as "Hey, man, can you please back off for a sec?" and when he sees how everyone backs up for a sec instead of having a giant panic attack he will notice that the gesture is a better lifestyle than the aggression, because the aggression really seriously just causes a bunch more noise whereas the gesture makes people step off, so hence it is truly a better solution to the "people in your face" issue.  Does that make sense?  It is really, honestly a real improvement in his real life.  He can learn it because there is a point to it.  If everything on his FBA/BIP has this feature I am seriously serious that it will have more of a success rate because he will see the reason and have a purpose for being motivated.  This is slightly different from traditional behaviorism because it takes his agency as a human with wishes and desires into account, rather than thinking of him mechanistically as like a behavior-machine, so you may have to explain it to the people working with him at some length, or print this and take it to them, just so they see that one secret twist that may have differed from their training and education that makes the whole thing work better (and by the way it also makes it more morally decent, but that is another story).

Also from liking to be outside and running and going down the slide, he might love the feeling of wind on his ears.  I love this feeling.  He might love it if he is on the front of a ferry or riding a bike or running track or in the car with the window open.  If he gets a lot of this feeling in life he might smile a lot, especially if he knows a way to get it on purpose other than running screaming from the room (which I do not know if that is why he does that... it might be the people in your face issue... you can tell when you track when and where he does it... it might be both).  People do learn to communicate more and more in ways that work better when they find out it works better.  Nothing succeeds like success.

I think there might be a positive feedback loop situation when he learns some better forms of communicating at school and then hence also you yourself get happier and less stressed.  In my imagination because you love him so much he is probably also aware of your mood and wishes you felt better but doesn't know how to communicate that.  This is not like me trying to blame you for how you feel but just to let you know that J cares about you and when he sees you getting happier if he puts 2 and 2 together with that he will also get happier and that will just be another motivator for him.  I think he loves it when you brush his teeth because that is you touching him and he just loves being near you. Maybe if you put his toothbrush there on the sink and brush your own teeth there too and he can copy you parallel in quiet he might like that, like a ritual you can do together.  Could be worth a try.

Think about J's smile and think about how totally real and happy it is and pure, when he is happy.  I don't think he is going around thinking about being dependent that much, just guessing, especially not on you, because that is just him being with you. Speaking of the concept of independence, and how it is a concept that not everyone has that much of a priority about, I want to talk about Eric, so.

Let me talk about Eric for a minute and then get to labels in general.  I knew Eric when I was in grad school and at the time I considered him to be happier than me because he was laid back and doing his thing whereas I was trying to negotiate all these situations where I did not fit in and had no idea how to act.  In a lot of ways I was bugging out and that is why I went to see him so often because his happy mellow beach dude energy was extremely relaxing.  Then I got into this living situation where I did not have my own transportation and could not visit him whenever I wanted and I was seriously ultra bugging out, and it was a nightmare and my anxiety increased a lot.  There were no situations where I could just seriously just BE and know that the person I was being with would completely understand the concept of doing that, of doing, well, nothing.  I do have a friend like that in Seattle but Eric was it in my grad school.  There's trade offs like he has these noisy roommates whatever but the state pays his rent and he lives AT THE BEACH I mean he is this beach guy with a pretend job and the economy allows him to live at the beach in Southern California, and he just walks away from his roommates, because it really never rains there, so why be inside?  Yeah Eric knows what he's doing, he chooses.

Which brings me to labels.  The reason I am not in love with them is because they are so context-driven.  Eric is probably considered "low-functioning" because he has a fake job and lives in a group home and hardly talks and can't write but during that time period when I lost touch with him I had, because of my "high-functioning" lifestyle, an anxiety attack so bad I thought it was a cardiac issue and was admitted to ER because my blood pressure got so high (my resting blood pressure is on the low side).  Everything was becoming absolutely terrifying.  Slightly later, I was in horrific pain because I needed surgery, but I did not realize that the pain indicated a need for surgery.  It was just something I didn't like.  This lasted for some time.  At some point my mother noticed on the phone that there was something wrong with me and told me to come home so she could check out what was going on.  I did, and apparently it turned out to be a life-threatening situation that was also apparently kind of obvious, but again, with my time agnosia and various "spacey" aspects, I overlooked the danger.  Fortunately, my mother was there to get it taken care of, and I lived.  Long live Moms.  :)

So now by the grace of God I am happily married and hence if I were to need life-saving surgery, my wife, who is a nurse, as is my mother, would notice this detail.  They sort of gang up on me.  :D.  So, but also, if Eric and I were on the beach itself instead of on the cliff, and high tide were rolling in, and we were on the wrong type of sand bar, he was the one who had it together to know that, not me.  No matter how much of a professor I am now and he lives in a group home and I am writing and he is probably thinking about the waves and smiling for no apparent reason, even though there is a reason, since he is thinking about the waves, which are smile-worthy, he is the one that has it together to know how not to drown, not me.  So that is kind of what I am talking about, about context.  I could be drowning, and Eric could be saving my life.  Is he low-functioning and I'm high-functioning then?  Just because when me and him both smile for "no reason" I am the one who can answer you when you ask me why?

But I understand that you need a thing to say.  I get that there is some kind of difference, and also that it is important to be able to talk to people, and not have it take seventeen hours of TMI.  That is logical and I do know what you mean.  Also I get that I feel a real kinship with Eric, if you saw us together, we wouldn't seem that different, and if I could meet your son we would probably be able to relate at some type of interesting level.  You would be like, huh.  I am not sure why this is, but it has been happening for years.  First I want to suggest a thing to say and then why I like it and then why I don't like the others and then talk about Pascal's Wager as a reason to be careful and use the thing I like which is value-neutral.

Here is the thing I like, which is value neutral.  I got it from Shannon Des Roches Rosa, who wrote it about her son: she said he has "high-octane autism."  That just really appealed to me because you get the point that it is a big deal, but it doesn't sound like such a bad thing.  It kind of sounds, you know, race-car-ish.  In fact, it might even be a little on the awesome side, if her son were to overhear.  (Hi Shannon Des Roches Rosa, I hope you see this!  I don't think I can tag you but I wish I could!  I am writing that I love your word!)  On the other hand, it's not like other listeners wouldn't get the point, you get the point, high-octane.  Not wimpy.  Serious.

So apart from the "severe" and "low" and "high" labels being inaccurate sometimes because they change during context changes, I also don't love that they reduce people to "functioning" like a human is a human doing rather than a human being.  We are meant to BE.  That is what makes us worthy, not high or low.  But the A Number One thing I dislike is that people might overhear and feel heinous about themselves.  This has happened to a lot of people I know, and it is just not worth it.

Sometimes it seems like No Way Can He Hear And Understand Anything.  Or maybe you didn't think that but some doctor or speech pathologist or psychologist or psychiatrist told it to you for an alleged fact, and you were like, well, guess they are the Expert.  But I don't think the risk is worth it.

So my way of thinking about this is based on an idea made up by philosopher and mathematician Blaise Pascal called Pascal's Wager to see if it would be a good idea to believe in God.  You can see in the article if you click on it (it's a good one) that the idea is controversial, but it is still useful as a framework.  Basically it is that you picture all four scenarios, and here it is filled out for positive and negative language and the kid understanding you or not, with the outcomes: 

To me (and also to Pascal, which was his argument on why we should believe in God) even though the two situations on the far right have nothing happening, and that's 50% of the likelihood, it's just not worth it to go there because the lower left is so much worse than the upper left that you are kind of forced by reason to choose to believe (or at least kind of act like you believe, or hope anyway) in the conditions of the upper left, being "Kid understands words" mixed with "You say Positive stuff."  Remember, many people who can write did not learn how to write until later in life and to this day are what I am going to call High Octane :)

Does that make sense or help at all?  Now to me, I think High Octane is the perfect solution because it totally sounds positive to me or a kid, nothing wrong with it, my awesome car takes High Octane, but at the same time, the listener can totally tell you are not talking about some wimpy situation of a nerdy professor such as the writer of this blog, even though the writer of this blog may drown or get hit by a car or not understand the need for surgery or whatever it may be ;).

Tina, thanks for your patience.  I hope I was able to help on the FBA/BIP stuff.  It should really work fast if you run it by the teachers, the violent running yelling hitting stuff should get toned way down when he is understood, especially if you help them.  The toileting is different and I will need to look into that some more because making that matter to someone when it doesn't yet is a whole new kettle of fish so I want to open that up to other folks who may have had success, and also I will ask around.  Anyone?

(Most of all, seriously remember Love Prevails and J loves you and the whole family.)

All the best,