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!

Carol

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. 

Thanks,
Carol

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

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

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 don't 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. 

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: 

http://www.tinygracenotes.com/2012/10/a-person-is-not-function.html 

So I will do my very best to answer well and in a balanced and nuanced way.

All the best,
Ibby

I'll try to answer your questions. I'm glad you asked all these questions. I dont know how many I can answer but am trying 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 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, and it might not be such a bad idea to check, just in case) 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 want to tell you about this 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, 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 honestly, 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 he and I 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. 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. 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,

Ib

Meltdowns vs Tantrums (A New Mother Feels Alone)

I feel like I've just found a pot of gold! Is it really true that we can ask questions and you'll answer them? And that you're really autistic?! I'm flustered and don't know where to start! To distill down the story of my life which is now one big question and so few answers, I'll share this. Some weeks ago (exactly 11 weeks tomorrow, but who is counting anyway?) my 2 year old son was diagnosed with autism. The Dr believes him to be "moderate." That same week, his father, and my partner was also dx'd on the spectrum. I'm lonely and sad. I really don't know what "moderately autistic" means, or how to handle some of the behaviors my son exhibits. As an example, is it best to try to discipline tantrums, or is this something that he can't help? I want him to be thoroughly and authentically himself. But this want is conflicted with my overwhelming desire for him to fit in socially to avoid any unkindness coming in his direction. I feel terrible scolding him for acting up - should I? Is there a better way?

Dear Goldie,  (I am just making that up to call you, because I hope you did find a pot of gold; I hope I can do something good for you here.  You deserve to feel better and it would be my honor to be a part of that in any way I can...)

It's true, you can, and I am.  :)  Thanks for coming.

Here I will talk a little about the difference between meltdowns and tantrums, how you can tell, how to manage each in a quick super-effective way my mother used with me that has a good side effect for your stress level and doesn't involve having to scold/feel terrible (not that effective in either case, and I'll explain why in both cases).  Also I want to talk about how I think I might understand why you are feeling lonely, and my perspective on why I have evidence that some of the reason you feel lonely might be actually data suggesting that you are awesome.  Lastly, the fact that your son's father, your partner, is also on the spectrum can be used to your advantage, especially if everyone embraces it.  I have something to say about that as well because it took me sooooooooo long to embrace it and if I knew then what I know now... well.  I know it now so I'm hoping to save others some time and grief.

First, the immediately practical.

Tantrums and meltdowns can look very similar, especially when carried out by a two year old.  The primary difference is why they are happening and what they communicate.  You can tell the difference if you look at the scenario going on around the kid, what happened before and during, and also with practice by looking straight at the kid, listening to breathing patterns, hands over ears, not noticing whether you are noticing, etc.

I want to say straight off that I believe all two year old people are capable of having both tantrums and meltdowns, and will do so depending on the scenario.  The trouble with being autistic is that you have meltdowns a lot more and people think they are tantrums, so people think you are constantly having tantrums.  That is why I really want to speak about the difference, even though I am ultimately going to suggest a similar approach (but not for the exact same reasons, funnily enough).

In a tantrum, I am angry, trying to get something, or work it.  I am thinking something like this:

"I will NOT leave this SPOT until THOSE CHOCODRAGONS ARE IN THAT CART!!!!!  HOW IS IT THAT NOBODY HEARS ME!!!  I AM IBBY!!!!  I WILL NOT BE IGNORED!!!!!"  On the outside, I may be sitting there screaming, kicking, etc.  Chances are, I will look at my parents or guardians to be sure they are noticing.  This is often the primary dead giveaway.

In a meltdown, I am panicky, needing to escape, overwhelmed with too much or conflicting information or sensory horribleness, and cannot take it anymore.  I am thinking something like this:

"Aaaaaaaaauuuuuuggggggggghhhhhhhhhhhhhhhhhhhh!!!!!!!!!!!!!!"  If I could think straighter, so that words were involved, it might translate to something like, "My ears can't take the nightmarish din!  The lights burn holes in my eyes even if I close them, and my head throbs in a rhythm different from the muzak, which is torturing me!  People swarm they swarm why are they talking so much talk so loud dissonant why does she yell at him that man might want not to whistle when he has no pitch ack and the peanut butter is in the wrong place! THE WRONG PLACE THAT IS IT I AM DONE FOR!"  But these thoughts are rapid and really sound more like my first rendition. On the outside, I may be sitting there screaming, kicking, etc.  Chances are, if I'm looking at my parent or guardian at all, I look more drowning than angry, but probably cannot look, and have my hands over my ears or hitting the floor the cart-handle or even myself, eyes screwed shut in attempted escape.

So, tantrum is anger, and meltdown is panic.

Here is why scolding doesn't work either time, and there is a better way, but when you hear it, I hope it will change your life.  I think when my mother came up with it, life with baby-me became ever so much less of a nightmare in public.  :)

In a tantrum situation, you may scold, but because tantrum is anger, that sets up a power struggle.  You cannot really win this power struggle, because your two year old is totally not embarrassed about acting like that in public, whereas you are mortified by the insensitive, judgmental people staring daggers at you.  Kid wins.

In a meltdown situation, you may scold, but because the kid is totally overloaded, chances are you are probably not getting through at all and nothing you say is even being heard over the din of the heinous fluorescent audiovisual buzzhum mixed with the everlasting human yimmer-yammer and the competitions of the multiple musics and lasers and cash registers out of rhythm off of key and the whooshing thud of the heartbeat of panic trying to block it out when he can't even trust where the peanut butter is....  Not useful.

My mother's magic fix works equally in both situations for either reason.

Here's how it goes.

First, very early on in the process, my mother quietly, calmly would say something like, "If you settle down, we can stay." This would make there be a choice if it happened to be a tantrum where I could cut it out still and might want to choose self-regulation and staying.  If it was going to be a meltdown, of course I did not want to stay, and also I would not be able to settle down, so this was a win-win item of communication.

Then, if I wouldn't or couldn't settle down, we would promptly leave the environment, just immediately pick up and go, into a quiet place, preferably as green as possible, which is calming.  Here is why this is a good idea in either circumstance:

1.  The tantrum: There goes the Chocodragons, not in the cart, no chance of getting in the cart ever, and the judgy busybodies who think they could do so much better than you don't have time to formulate that thought, let alone stare meaningfully at you trying to let you know it.  Meanwhile, if this happens consistently, I am soon to learn that the tantrum is the least effective method of getting my way known to childkind.

2.  The meltdown: You are my hero.  The world had become a roiling nightmare and you fixed it.  When this feeling of overwhelm keeps happening to me I will probably keep melting down at some point because I cannot help it, but I will feel calmer in general knowing that you are there and you know how to make things better.  My general anxiety level will decrease as my trust increases because I have been understood.

It made me very happy to read where you said you wanted your son to be thoroughly and authentically himself. I think it is not possible to prevent unkindness from coming anyone’s way, because people are going to be how they are going to be, even if this includes some unfortunate meanness and ignorance.  But having such a supportive mother in your corner who gives you the confidence to be yourself with a clean heart and courageous mind makes a lot of unkindness bounce off of you in ways it would not bounce off if you were more insecure because you could tell your family wished you were different.  So your son is off to a very, very good start as far as I can see!  Let the mean people change; there is no reason for people who are minding their own business just being themselves to change in order to suit the mean people.  This is a thing the world needs to learn to do better and I clearly see that you can be one of the right-minded ones with good instincts who help get this new direction flowing.

The last thing I wanted to talk about was that you have the possibility of much community if you are interested and do not have to do things alone.  I really don’t want you to have to feel sad and lonely because just from your writing I can tell you are awesome.  Other evidence I have that you are awesome is that people on the spectrum are known to be kind of on the picky side, and your partner is now known by me to be on the spectrum, so, logically, a picky person picked you, therefore… you follow me.  More reason to believe you are awesome.

Chapters of the Autistic Self Advocacy Network  (ASAN) which your partner could join anywhere work differently, but I know the one in Chicago also welcomes family members such as yourself who value neurodiversity, which is to say you are someone who wants people to be able to be authentically themselves instead of having to pretend to be “normal,” whatever that means.  I don’t know where you live, of course.  But feel free to contact me back again to put you in touch with the communities in your area.  On Facebook, also, if you enjoy networking online, there are many satisfying ways to make friends who understand, and I could introduce you around, if you feel that is something you would like to have happen.

The fact that your partner is on the spectrum himself could be a wonderful resource if he is in a place where he is ready to embrace it.  He might not be, though.  It took me a while to feel good about it because of the way the world can be.  But things are changing now, for the better.  If he is OK with  his own diagnosis, though, the sky is the limit on ways he can be a role model.  There are excellent groups also on the internet for AS parenting I can hook you up with.

The last thing I want to say is that if other things come up and you just want to write back here instead of getting into communities and everything, please feel free and welcome!  You don’t have to “come out” on Facebook or anything, and I’m not trying to make you do that.  Just be Anonymous if you like, but tell me you are Goldie :) .

All the best,

Ib

Motivation to Speak (My Macedonian Son Speaks English)

Jane (that is my son, it is pronounced YAH-NEH) started to speak Macedonian (his mother tongue) at around two and by 3 1/2 he started to use English words. Gradually, he totally abandoned Macedonian and he used only English. All of his therapists and teachers insisted on him using Macedonian and now he speaks English at home and Macedonian in the school to sometimes awkward results. I know it is really hard on him to use Macedonian, so my question here would be if I should also insist on Macedonian, having in mind that it is an official language here and that using English only would render him maladjusted? Unfortunately, current state is also unsustainable as it is very confusing for him to be bilingual?

[To get further information I asked a little more ("Before I go into detail in a blog post answering you Maja, would you mind if I ask some clarifying questions? Are you or your partner (or both) a native English speaker? If so, does the English speaker have very fluent Macedonian? .... Will you tell me more about Jane, what he most enjoys doing, what you think he would read about if he could read well, for example, and what he chooses to do when given free choice of all things to do? What is your personal assessment of him in expressive and receptive language? Which is easier for him, do you think, for example?") and here was the answer:]
 
I would say that my English is fairly good, but my husband's is not so. Jane is learning his English from TV and movies, mostly. Most of the people we are socializing with I speak English to certain degree, so it is not difficult for him to acquire new words. I have to admit that at the beginning when he started to use English I encouraged him, I thought that it is good for him. Later, as his therapists insisted on him speaking Macedonian, I tried to reduce English usage, but to no avail. I believe that his motivation comes from the fact that people appreciate the fact that he speaks English and it makes him feel competent....I almost forgot the most interesting thing: He likes to call himself DJ, short from DJ Music. He claims that he is English, not Macedonian.
  
At first my problem answering this was that I was getting stuck on the notion of whether bilingualism would be confusing if you were Autistic, even though studies have shown that it is actually helpful in increasing executive functioning in children overall, and the beneficial effects persist into adulthood (here is just one good example of such a study, with a useful bibliography pointing toward more).  I wondered if our brains were so different that perhaps the studies didn't count for us.  This is still an interesting question and one I might pursue at some point soon, if funders are interested.

But then I thought about it some more.  What is really going on here isn't really centrally a question of the thing I was hearing to to be, at first.  What is probably a more important thing to think about is that DJ here is interested enough in the English language to express himself in it quite freely.  You, his mother, have noticed that it makes him feel competent, and people appreciate him for it.  He is interested in aspects of English-speaking culture to the extent that he gave himself a nickname.

Patrick Schwarz and Paula Kluth wrote a wonderful book called Just Give Him the Whale which I believe gets at the core of what we are really talking about here, and may help you communicate with DJ's teachers and therapists why it can be an excellent idea to meet him in the English language.  The basic idea is that he has found a thing in which he is passionately interested, so interested that he wants to include other people, to tell other people what he is thinking, to use his imagination and share with them.  This is a wonderful thing, and can be helpful for him in further aspects of his life.  For example, in English, he may become interested in other aspects of schoolwork.  In English, he may finally become interested in Macedonian.  This is different from taking away his special interests and not allowing him to do the things that make him feel confident and passionate: it is the opposite.  The idea is that you as his mother can help his service providers understand how important that feeling of confidence and engagement and being interested is for a person who is trying to learn things, and use the fact that he cares about what he cares about to find the keys perhaps to get him interested in other things.

In short, I do not believe his Macedonian is awkward because he can speak some English.  I believe it may be becoming awkward because in the efforts being made to stop him from doing what he finds truly interesting, his feeling of competence is sliding away from him.  When your feeling of competence slides away, your actual competence is soon to follow.  (I believe this is true for every human being in the world, but it is so true for me that I can become absolutely stymied, petrified and broken down from the effects of it.  This is how I am also partly guessing the importance of not taking English away from DJ.)  Ask them to try it where he is the expert in his class at translating between English and Macedonian, particularly with respect to the plots and dialogues of key movies and song lyrics that are important to him.  See if his Macedonian doesn't pick up: I am almost certain that in circumstances of himself being positioned as expert, it will do just that.  Please get this book of Schwarz and Kluth I mentioned which explains more of what I am saying, and let me know what happens with this idea.

Another detail here I wanted to add.  You might have noticed that I am saying your son Jane is called DJ because he is calling himself that.  The reason I am doing this is a habit I have with people having to do with following their own specifications of what I should call them.  Sometimes it is not very important, just a type of politeness on my part, or a quirk, but other times it can be very important.  When a person who may not believe that speaking is a useful way of getting things to change or happen in the world finds out that he or she can exert small amounts of will into the world by speaking, this will make speaking seem more worthwhile.  Some people go through life believing nothing they say matters and nobody will care, so it has long been a secret personal mission of mine to announce through action that I am listening in small ways.  Here it will not do anything because I don't think DJ will read these words, but I am just telling you the habit I have of why I am calling him this, because you told me he likes to call himself this name so I am following his preference, and it does not matter to me that he is only a child, because children have even less power in life.

If you have any further ideas or questions or parts of it I did not address sufficiently, please also write back.  I am sorry it took me so long to answer because of the fact that I was trying to answer what I am now convinced was the wrong question!

All the best, 
Ib

Socialization and Inclusion

Which brings me to a topic that has baffled me plagued me given me sleepless nights and sometimes nightmares that's right I AM TALKING ABOUT SOCIALIZATION AND SOCIAL SKILLS!

I would love love *love* your view of what I've been told repeatedly in the past: social skills are critical for our children, social skills improve their speech, being with peers is how our kids imitate typical kids (earning their "pass" privilege I suppose).

I'll be honest, I come from an era (and also not of this culture, originally) where we didn't do play-dates. We didn't have preschool. My mom wasn't even sure she wanted me in kindergarten if I could start 1st grade, and primarily for academic reasons -- NOT for social skills.

My argument is, "why should I care if socialization comes from adults versus peers (kids my kid's age)? After all, adults have better social skills than kids -- it makes sense to me to have my child interact more with adults if this is where he's comfortable and he will learn social skills from people who have learned social skills. What's wrong with waiting until my kid's peers are beyond the age where they solve problems with physical action and change their moods 25 times in 15 minutes a.k.a unpredictable preschoolers?"

I don't get it. Please help me -- my brain is just not clicking on the benefits of socialization for very young children when it can be so stressful for those children.

This is a complex, difficult topic, and also pivotal and super important.  My overall views on it will come from two or three places or ways of thinking as I explore it here, but I will also include within my views a belief that in particular circumstances my specific opinions do change from the overall.  Some people might think this is wishy washy or unhelpful, but I think it is more helpful to be very precise about these things instead of having some sort of rule made up that is supposed to work for everyone, because that is not usually the way things work best in real life.

If, when you are reading this post, you believe your child is more like the counterexamples I am writing less about or mentioning as exceptions to my usual idea, and would like to hear more about that, please say so in the comments, because I will have amazing resources for you.

In my personal experience, which is going to be my first way of thinking to derive ideas from, I am very glad I learned from peers, even though a lot of the time I considered them to be noisy and baffling.  And a lot of them were randomly mean.  Not even just to me, I'm saying random.  Especially girls of a certain age.  I don't know if the reader will remember this.  You can read my view of it in the chapter coming out in Phil Smith's book Both Sides of the Table. 

But I learn a lot from pattern recognition, or trying to recognize patterns.  And if a pattern is kind of random, it takes longer.  So much about culture and enculturation and tribes and cliques and mob mentality and what makes people tick and who I am not and cannot be, I learned from being around a wide variety of people my age.  So much of what I know today that enables me to survive and thrive in real life is information of this very nature, and although I have read a lot about it and deliberately studied, my foundational learning about being able to recognize these things in life and put them to use in practical ways absolutely came from the brute fact of being put into situation after situation where I had to figure out how to be in the world with a wide variety of other children.

It was very valuable to have my parents and other supportive relatives and adult friends of the family around to explain things to me, to demystify them, to be on my side when things were unfair, illogical, unfathomable.  It was very affirming to have them around to be interested and maybe even kind of proud when I went on and on about whatever it was that had nothing to do with what anyone else I knew would be interested in.  Or, on the other side of myself, when I said something that made no sense to anyone whatsoever and they decided to interpret it as "poetic" and "creative," as loving adults are wont to do.

Now I am an adult person living in real life and I have to ask the reader: do you think the environments I typically find myself in, such as work (all due respect to my colleagues, you are awesome) with its arcane political structures and customs, the grocery store, the dry cleaner, the road, etc. have more in common with (a) mystifying sets of people thrown together doing their thing or (b) a tight community of people who are basically kind of focusing together like a benevolent team with the apparent primary purpose of making my life as awesome and seamless as possible?

Right.  So you see where I am going with that.  Well, or where I went, really.  So, having both was perfect, because I got hands on experience with what real life was going to be like, but then I got to go home and have supportive wonderful people on my side to debrief with about it.  (Life is still like that, because I married well, and we do that for each other.)

From a more theoretical child development standpoint, autism is considered a developmental disability, which actually makes a lot of sense to me when translated into the old idiom "late bloomer."  For me, the late bloomer-ism was social/emotional and my academic was OK, but from others, the sensory also blocks academic (the way I see it... I feel like the sensory is what blocks most of the development because whenever I get more hazy at things it is because of that bombardment, and also when I look at others who are shutting down or melting down I can see them clearly as experiencing overload.  Remember that so many of us experience emotions like a physical sense instead of like a cognitive thought.  We get sick or pained rather than confusing "I think" and "I feel."  I should probably write a separate article about this since I have had so many conversations with friends about it.  But anyway...)

So: it's to do with development.  Piaget thinks development goes like this: you get ready, and then you can do things.  Vygotsky thinks it is more like you learn by doing; doing flexes your readiness muscles into their potential.  That is an oversimplified comparison, because I love doing oversimplified comparisons, but you see what I mean.  Vygotsky, whose team I'm on, also believes learning is social.  I recommend reading some of this stuff, or starting with Joan Wink and LeAnn Putney's A Vision of Vygotsky for a fun, well illustrated intro.  Because of my own life experience, as well as my experience as a teacher, I also think learning is social, and you don't just magically get ready for stuff: you have to practice.

Back to my life: school didn't get a chance to help me much academically, because I come from a family of intellectually curious people who fluently answered my questions and read to me until they'd saved up enough for an Encyclopaedia Britannica, at which time they added "you can look that up!" to their repertoire of awesome intellectual support (which also gave me countless hours of cross-referencing derailment fun).  But it was at school where I learned to find the kids that were nice to me, and the primary way of it was to find the ones with whom I had interests in common, and try to see if I could get interested in as many of the things they introduced as possible.  What many of us really had in common that I could wholeheartedly endorse was Baseball.  (More details in Phil's book.  I am not a bookseller, I just don't want to give the whole chapter away in this blog and then everyone will be bored by it when reading the book.)  School was brilliant at helping me socially.  I learned some discernment, and some adjustment, and some communication.  

I also got some desensitization.  These lessons came over and over again and some of them came at great cost, especially during middle school time when the girls get meaner and the rules harder to work out.  In high school, I couldn't take it any more, was kicked out, and moved to an alternative school situation.  Desensitization was happening at a slower rate than introduction of stressor stimuli, as they would put it in terms-like-that.  I put it in terms like that because I think part of what is good about going to school even though it can be on the nightmarish side is because it toughens you up for real life, which, I mean, not that life sucks or anything, but you have to notice it is full of loud, awkward sounds, headachy smells, social rules that are barely short of Byzantine, and why-would-you-even-create-such-painful-ugliness lighting situations, some of which include gratuitous nasty sound effects.  Well, I mean, you the reader probably didn't notice all of that, because you have special powers enabling you to ignore such stuff, and now that I have pointed it out to you, you might have to notice some of it, thereby making your life have some more annoying features.  Sorry.  Forget I said anything.  :)  

This brings me to the counterexample.  For most kids, I really do believe it is a good idea to be exposed to one another.  I believe in an inclusive world.  However, the thing about desensitization is that there has to be enough good mixed in with it to make it worth it so you don't completely shut down or melt down.  It can't be a complete and utter nightmare where you can't get anything out of it.  If that is what is it like, then you are indeed not being exposed to other kids, you are protecting yourself from any exposure to anything, because you are so bombarded and freaked out, which is the opposite of what is supposed to happen.  If I am talking about your kid, I would start smaller, like yes to the play dates, one or two kids, and some people need to organize their own educational situations in order to do this.  Also, you can increase the number of friends if and when needed, and you can pick friends who have features you want, such as a non screechy voice, an even temper, patience, an exhaustive knowledge of seventeenth century metaphysical poetry (well, or you know, something that kid and your kid can relate about).  So in some ways some people might be doing this to get their kid desensitized enough to benefit from school next year.  Alternatively, some people might live in a place where they don't trust the school system, or had a bad enough experience, or for some other reason they will continue to organize their own situation for the kids.  I still think and believe people who do this well are not isolating the children or having them only socialize with adults.  I know someone who does it very well, which is no easy task, and I will ask her to weigh in here on the comments if she feels like it, but I don't want to call her out by name in case she does not feel like it.

If she does not weigh in on the comments and you the readers feel like this is your kid and you need to hear more about that aspect of things (unschooling) let me know and I will go get her and sweet-talk her into feeling like it :).

If you think your kid might be more like me and benefit from school for social reasons even though it is difficult, but you want more information on how to get started on making it a benefit instead of a giant nightmare, from the parental standpoint, let me know and I will ask my mother.  I do remember coming home from school a lot with problems with mean girls or things like that.  I even remember their names (I wonder if Eric secretly remembers the names of the jackwagons whose names he decides not to utter?).  I do not remember my parents' perspective on how they made it all better because I never knew it, but you may be interested in knowing it, and actually so am I.  :)  Let me know what will work for you.  I'll just end by saying they did make it all better many times and from my perspective a lot of it had to do with Baseball.  They did a lot.  You do a lot.  I salute you.

Yours socially, 
Ib