Saturday, October 27, 2012


I am so tired sometimes. I look at what is happening in Joey's world, and the issues being created by the adults in it- or simply being left unaddressed- and it makes me tired. No wonder Joey is exhausted. The constant anxiety in which he lives his life, and the ways people react when he expresses it, would be enough to leave most people ready to... well, jump in front of a car. Or run screaming into the night. We shouldn't be surprised when he attempts to do just that, really. Sad and angry, but not surprised.

Let's take yesterday for an example. I'll start in the immediate middle of the story- Joey returns to his mainstream classroom and finds a good friend has been assigned "silent lunch"- that is, he will not be able to sit with them at lunch, and he understands they are being punished. Despite the friend's assurances that this punishment is merited, this causes Joey serious anxiety.

The expected response in society is that the child "stew." That is, they might be angry about the situation, but they keep it to themselves. This likely makes the child appear peevish or grumpy, but they keep their thoughts to themselves, letting the anger rattle about in their heads without coming out their mouths. Interestingly, we all too often go on to berate a child in this situation for being grumpy and irritable, instead of giving them time and support to work through the emotions for which they have no available outlet without getting into even more "trouble." Should the real anger and frustration come out, we often punish the unexpected behavior to silence the child.

Joey does not have this coping mechanism. We have taught him- gone to great pains to teach him- to speak. Additionally, being autistic, his use of language is different- for Joey, he attaches emotions to words and phrases, and so when those feelings arise, those words come out of his mouth. Unfortunately, discomfort, embarrassment, and anger have been attached to words and phrases that make him uncomfortable, embarrassed, and angry, and those words are not ones we use in polite company. Taken with a 10-year-old's increased emotional load and anxiety due to normal development and the onset of puberty, you can imagine that Joey might get quickly overloaded in this situation, and revert to fight-flight mode.

We have strategies in place to keep him safe from flight. We have people to block doors, places for him to go, signs to remind him when he enters blind panic or rage to stop and give him that breath of time to recover enough to be functional, even if minimally so. Enough to stop the flight.

Apparently, we have not done such a good job if his brain decides to go with fight.

Joey became increasingly verbally abusive, and I am actually surprised he did not become physically abusive. Something was different, it was wrong, it was a horrible ugly rent in the fabric of the universe for him. He got angry, and he dealt with that anger in a way that society views as unexpected- he communicated it verbally. And loudly. And without appropriate and proper intervention to help him work through it, he spiraled out of control, and into a dramatic meltdown. Probably about a level 4, since there was minimal physical damage. But enough that I think the teacher freaked out a bit, never having seen a real meltdown before. There was no one in the school with solid autism experience or understanding of behavioral responses to intervene and support either Joey or his teacher.

He finally returned to his self-contained classroom, where he started to lash out at the adult before him- his teacher. And she reminded him- prompted him- that she would not have it, and that his reaction was unexpected. The short walk to the classroom, and being confronted with a new person, likely gave him that half a breath he needed to start pulling out of the anxiety response- he remembered himself, and stopped. Unfortunately, this was used as evidence that he could stop- if not in the official reporting of the incidence, certainly in the minds of the adults dealing with the situation.

And so the mainstream teacher wrote him up. And the admin awarded him the glorious consequence of an in-school half-day suspension.

And now comes the kicker. See, this is the middle of the story. This was the trigger event. This was the behavior and the consequence, but I haven't given you the whole antecedent.

When I spoke with the teacher, I asked about his day. I learned two important things:
1. His schedule had been altered to include a morning activity of writing. Although he did well with the activity, and seemed fine, it was a schedule change. It was unexpected. But perhaps we can assume this was not feeding into the problem...
2. But being teased at lunch probably should not be ignored. Most of Joey's classmates are now very, very familiar with him, but there is a new child who is still learning. Apparently, New Kid somehow goaded Joey into bolting from the cafeteria at lunch. It is unclear whether this was deliberate, or whether Joey's lack of filters meant he overheard something the child was unaware Joey would act upon or even hear, I don't know. But the result was that Joey understood he was being goaded into leaving, and he left. Joey knows when he is being targeted and teased. Imagine how you would feel.

Connecting discomfort to the lunch period, he then went back to class and found that a comforting person would not be having lunch with him. You know an uncomfortable situation is looming, and now you are shown evidence that something that makes it bearable is being taken from you. How would you feel? And how would you react? I'll bet "uncomfortable", "anxious", and even "angry" would be in that list, my friends.

Now let's go back and review how Joey copes with these emotions... in unexpected ways.

Oh, and now let's punish him for it. That will help make him feel safe and comfortable, right? Right?

I am sure I will get email, and possibly comments, about how to "take it from the admin's point of view." Or the teacher's. Or anybody but Joey's. Save your breath. I get it all the time, I see it all the time, and it is time these "professionals" started seeing it from my child's point of view- and started offering him (and dare I say, the rest of the kids in their care) appropriate support and understanding, even when it is difficult. Hearing "we are very accommodating to Joey here..." on the phone made my blood pressure jump. Yes, accommodating, until you aren't. Like "accommodating" a kid in a wheelchair, until there is a step you haven't bothered to remove from their path to get to class. "But we put ramps everywhere else!" is no excuse. You have to put a ramp here, too.

Unless, of course, you have no intention of that child actually being able to access their education all the time- just when you feel it is convenient to allow it.


little.birdy said...

Is there a BIP in place and was it followed? If there is no BIP, then there needs to be one, and if it wasn't followed, then, well, the school is at fault, as I understand it.

Joeymom said...

Unfortunately, it is an older plan that focuses only on the bolting. We've been seeing more fight now. Wish we were also seeing less flight.

farmwifetwo said...

BIP would be nice... but how do you account for everything. My youngests teacher does very well but still I get home stupid "Russ did...." notes regularly and as you mentioned most are due to autism related issues - mine are minor and had my kid been "normal" no mention would ever have been made of things - which annoys me more. Or simply "Russ had a good day". Nothing about what or how he learned today. Never have from any teacher starting in K.

Then we had a supply teacher on Friday who left a note about how he didn't participate and I'm just itching to be a .... and tell them it's not his fault but the supply's since autistic children don't socialize well with strangers and changes in routine....

April is coming and the letter will be written... we're done for atleast 2yrs. I need the break from dealing with the school system as much as he does.

I have no suggestions b/c in the end I'm just not certain the school system cares... just a wish it'll get sorted soon.

Katie said...

I hear where you're coming from. I truly do. Disclaimer: I am a special ed teacher, I teach in a self-contained 6:1:1 classroom with children diagnosed (both on paper and in reality) with severe autism. I will freely admit that inclusion makes me anxious. I think it's amazing when done well and that we absolutely need more well trained inclusion teachers and most essentially, well trained inclusion paraprofessionals to meet the needs of kids like Joey. Inclusion makes me anxious because I worry that I would not be able to provide the support and educational access that students like Joey need all of the time in a mainstream setting. I am comfortable in my self-contained, 6:1:1, severe autism room, with violence and biting and frequent chaos, because as much as nothing is clear cut, to some degree, it is far more clear cut then inclusion. I do not envy Joey's teachers or school, nor do I envy your job as Joey's mom and chief advocate. I hope I never find myself in an inclusion classroom, but if I do, I hope I'm privileged to work with a parent who loves and hopes and dreams for their child as much as you do. You are an amazing advocate and a wonderful parent. I ache for both you and Joey that you are dealing with such sub-par education, and have been for so long.

Anonymous said...

Hugs, my friend. Don't forget...IDEA disallows punishment for behaviors stemming from a chid's disability/ies. It is school's responsibility to make sure they have a full understanding of how his disability affects his access to education...including all of the intangible social navigations and dealing with the unexpected. If they cannot unerstand and do not have someone in the district to educate them, then it might be that he needs a placement elsewhere...where they can not only understand the far-reaching and quixotic effects of his autism, but can also properly support him so he develops coping mechanisms and a greater depth of communication skills. And where they help him work on developing executive function. I'm sorry his school is failing him so horribly.

kristi said...

I feel the same way about my son. It makes me anxious all he has to go through and what is it doing to him?