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