Signs of Stress, and the Ability to Choose

[ETA: I have rewritten the recount of the incident with Adam.  When I first wrote this, I misread the details my mom told me, and she corrected me.  This version has been updated to reflect that.  Those of you reading this a second time, please take note of that so that we are all on the same page].

It's been a long time since I've posted anything here. Now that I'm back, there are many things I would like to write about, but something pressing has come up in my family that deserves attention first.

Before I detail this, let me give a little bit of a prologue.  I now work at the Loveland Living Planet Aquarium as an On-site Educator.  My job is basically to be engage guests in a variety of ways, from formal presentations, to simply walking around and answering individual questions about the animals.  One of the things I do is work with our Ambassador Animals.  These are the animals we  use in things like field trips, on-site animal encounters, birthday parties, and news broadcasts.

The Ambassador Animals we have range from cockroaches to parrots.  And through every level of training with these animals, we are taught how to properly handle them, how to recognize their signs of stress, and what to do if they are stressed.  If an ambassador animal, regardless if it's a cockroach, snake, hedgehog, or parrot, shows signs of stress during a presentation, we end it early.  We do not punish the animal, nor do we scold it, hit it, or force it to do something.  We simply respect its space and put it back.  If while getting an animal ready for a presentation it shows signs of stress, we do not use that animal.  Even if some birthday party adamantly demands that we bring out a tortoise, if that tortoise does not want to come out, we do not use it.  This is what we like to call giving our animals the choice of whether or not they want to participate.  This is actually a practice that basically any zoo or aquarium with AZA certification or similar adopts.  Allowing the animals this choice actually reduces things like stress and anxiety overall, and lets them be comfortable in their space.

Anyone would agree that this is a more than reasonable policy.  It is well thought out, well researched, and strictly followed/enforced.  It shows that we value the quality of care we give our animals over letting someone have a cool snapchat moment, as it were.

Now let's jump to another situation.  One that is real, and involves my family.  As many of you know, my older brother Adam has low-functioning autism.  I wrote a post about him a few years ago here if you want some more context about him.  His official diagnosis is low-functioning autism with mental retardation.  He is non-verbal.  He cannot live on his own.  He knows only a few signs, and only in recent years has he begun to use a communication device like this one, and even then he is still learning.

He has been going to a day program several days a week.  These sorts of respite programs are very important for him, because he'd otherwise just be stuck at home all day, and as much as we love him, we are not equipped to handle that 24/7.  He needs very particular, specialized care.  From what I understand of it, much of this day program involves taking Adam and other people like him on group field trips to different places in the community.  Basically, the purpose of this is to help build skills they can workshop, and provide a sort of enrichment.

This all sounds well and good at face value, but here's the problem: Adam is extremely routine oriented.  Yes, sometimes he can enjoy new things, but when he gets overstimulated or put into a situation that is stressful for him, he. does. not. like it!  Even in environments that are otherwise normal to him, simple things like certain noises or lights can trigger stress.  In short, he has his good days, and also his bad days, and when it's a bad day, he can and WILL let you know!

Signs of stress include:
- Changes in facial expression. If he visibly looks angry, scared or frustrated just like anyone else would, then yes... he is stressed.
- Humming/grunting in an agitated tone (he hums when he's happy too, but when agitated the tone is completely different, and you can tell. Really, you can. Think like happy, contented tones vs. angry/sad/scared tones, and yeah. That's Adam-speak)
- Increase in repetitive behaviors, i.e. agitated pacing, lifting his shirt up while he pats his sides with his hands, or fidgeting his fingers.
- Pressing the backs of both his hands against his mouth while he shakes and loudly hums/grunts into his hands for a few seconds at a time (think kind of like someone screaming into a pillow, but not as loud).
- Crying
- Angry screaming
- And at worst... pinching, scratching or pulling hair.

There.  I just taught you Adam's signs of stress.  It does not take a rocket scientist to recognize them.  I would venture to guess that even a total stranger just observing him on the sidelines would be able to recognize most of that as such.

Now with recognizing signs of stress comes learning how to properly deal with these signs.  We as a family have learned the hard way that it is very very VERY important not to further escalate to situation by reacting in kind to his frustration.  He may not be able to speak, but he can tell when you are angry or otherwise upset, and when you are not patient with him, he will certainly not be patient with you back.  This is what leads to the pinching, scratching or hair pulling.  That kind of violent behavior on his part does not happen in a vacuum.  More often than not, it happens because he was provoked, or because you have not been paying attention to any of the other ways he tries to communicate with you.

I will openly admit, we as a family have not been perfect in our patience with Adam.  We have had to learn a lot in the past 28 years about how to deal with this.  We are still learning.  But at no point have we ever held Adam responsible for his own actions.  Adam does not know any better.  We do.  There are situations where moments of such agitation, even violent ones, are unavoidable, but we have to keep our cool about it as much as possible.  In rare, extreme cases we have had to defend ourselves, others, or Adam himself from harm with greater force than simply using calm words, or gentle restraints; but at no point have we ever thought it was okay to abuse him or hit him simply because we lost our temper.  Like I said, Adam does not know any better.  We do.  We are not perfect about this, but we are learning.  We love Adam, and want what's best for him.  We want other people to know that he needs to be respected and listened to like any other human being.

If a dog whines, growls at you, shows its teeth, or bites you, it does not do so for no reason.  It is not doing that to be stupid or mean.  Rather, it is trying to tell you something.  It is no different with Adam.  He may not be able to speak, but he does communicate in his own way.  You can tell when he's happy, calm, excited, angry, scared or sad.  And he is not an automaton.  Choice and individuality do matter to him.  This is where the rest of the story comes in.

The way his day program operates is under a paradigm set by the Obama administration where sheltered workshops must be community based, which is why they go out on these "field trips" almost every day, and often times for the entire day.  That doesn't initially seem like a bad thing, but in application, it is just another one size fits all solution.  EVERYONE in a workshop group MUST go on the same trips, whether or not those trips are actually helpful.  They have little choice in the matter.  Not only that, but the means of transporting these individuals is by cramming as many as they can into a small van.  Now, you can quickly see why something like this could be stressful for Adam.  He is put into a larger group of people, piled into a cramped van and shuttled around to a variety of destinations that have little routine to them, that are unfamiliar, don't interest him, and that can last for the entire day.  These destinations may not even be relevant to the needs of those individuals the day program is meant to cater to.  In spite of that, they are forced to go to these places whether they want to or not, or even whether these places actually help them or not.  Again, this mandatory participation strategy comes in package with the policy the Obama administration set.  It was well intentioned, but it still tries to put everyone who is mentally disabled into a neat box.  It doesn't work that way.  In the past, these people had more of a choice in what activities they wanted to participate in.  Now, they don't, even as multiple different families across the state of Michigan at least have complained.

Initially, Adam did like this program.  He was excited to go every day.  He seemed to adjust well when he was first introduced to it, which is why he was placed in that program.  But lately, he has had behavioral issues.  In order to stay in this workshop, he has to participate in at least a majority percentage of the field trips, otherwise he is in danger of being kicked out.  That would leave my family with little to no options for him as far as workshops go.  Now like I said, Adam's behavioral issues do not necessarily happen in a vacuum.  Sometimes it may be hard to determine what is setting him off, but he does not get agitated for no reason.  And in this case, the reason became very obvious.

Several days ago, Adam was apparently about to go on another field trip.  He'd been reluctant to go on some of these trips lately in the first place, and in this case it was due to the fact that he was being crammed into the van with another workshopper that was explicitly bothering him.  Still, they were trying to shuttle them all into the van anyway, and Adam became increasingly upset about this.  Not having another avenue to alleviate the stress he was facing, he started to go after the individual who was upsetting him.  When a staff member tried to intervene, he pinched her.  In response, she punched him in the face.  Yes.  You read that right.  She straight up punched him in the face.  A day care worker at a special needs workshop, allegedly capable of dealing with the challenges of working with special needs adults, punched Adam in the face because he pinched her.  She did not do this out of self defense from an extremely violent situation (I would be a little more sympathetic if that were the case, but even then...).  She simply punched him because she lost her temper.  Adam came home with a black eye that day.

In this particular situation, the pinching might not have been avoidable... short of maybe, I don't know, not forcing him into a tightly packed van around a person he wasn't getting along with that day in the first place?  Unless he hadn't shown any signs of agitation up until that moment, why would  you not separate the two before it escalated like that, and/or wait until he had calmed down before proceeding?  Granted, the finer details of this incident are still being investigated, but even in the event the pinching happened spontaneously, NO WORKER SHOULD EVER PUNCH HIM OR ANYONE ELSE JUST BECAUSE THEY LOST THEIR TEMPER!!!  THAT IS NOT ACCEPTABLE TO DO WITH THE ANIMALS I WORK WITH, LET ALONE TO A PERSON!!!

She was promptly fired, and to be fair to the workshop, they were going to press charges against her but couldn't legally do so as they were not Adam's guardians.  After a great deal of thought, my mom decided to press charges.  Otherwise, this person could still work at another day program or nursing home, and very likely do something like this again.  Adam's rights were violated, and he needs someone to speak up for him when few other people will.

This is obviously one of our worst nightmares when it comes to Adam.  We hear horror stories of special needs kids/adults being abused by teachers, counselors, para-pros or bus drivers who have not been properly trained on how de-escalate situations like this without resorting to violence.  Now it happens to Adam, and some of his behavioral issues start to make sense if staff like this lady is what he has had to deal with lately.  I mean, imagine if you were in Adam's shoes.  You can't talk, you can't sign, you are stressed and no one is listening to you.  You are trying to tell them how you feel, but they ignore it, and keep forcing you into something you don't want to do.  Someone starts to yell at you, grab you, and then even punch you.  How would you feel?  How would you start behaving after that?  He is not just being stupid or mean, he is trying to tell you something, and you are not listening if you just react with greater physical violence in turn!

Two things were taken away from Adam that day: respecting his signs of stress, and giving him the ability to choose.  Like I said, the entire incident could have been avoided if the staff had recognized and responded appropriately to his agitation in the first place.  So more adequate staff training is definitely needed here.
But that still wouldn't address the root problem, which is: don't make Adam and people like him go on every trip they take while being packed like sardines into a tight van, especially when some trips are not relevant to those affected.  In light of all this, my mom created a petition on change.org to address how we need to start giving those with mental disabilities the ability to choose again.  Why?  Because it would greatly reduce the stress and anxiety someone like Adam might otherwise experience, and it would let special needs programs be better tailored to the individual.  People with special needs are not all one in the same.  They are individuals with different personalities, skills, wants, needs and goals.  Unfortunately, state programs meant to address these needs are often underfunded, understaffed, poorly trained, and/or corrupt if not non-existent.  Solutions that would seem to be common sense get shoved under the rug courtesy of detached bureaucrats.  (And those that are earnest and well-trained staff have no choice but to just deal with it.)  This is especially true in Michigan.

This was the petition my mom created.  I urge you all to read it and sign it.  It would mean a lot to us.   This would be a great start in reforming how we approach the needs of people like Adam.  It is not the end all, but it is certainly a good beginning.  It would be a well needed paradigm shift.  When more people start to care about how ill-advised policies adversely affect individuals and families that rely on these programs, that is when things can start to change.

My mom focused a lot on Adam's ability to choose when she wrote her petition.  As I read through it, I couldn't help but be reminded of my own training with the Ambassador Animals.  We know to look for their signs of stress.  We know what to do when we see them.  And we give them a choice to participate.  Even if it's a cockroach, if it is not cooperating, it is in essence choosing not to participate, so we let it be.  And that's for a simple cockroach!!!  What about Adam!?!?

Seriously, I can't help but think: how is that we can give animals as insignificant as a cockroach simple choices, and respect their space when they are stressed, but somehow it does not occur to those in charge of writing public policy or staff training that those with mental disabilities deserve the  exact same courtesy, if not more so!?