September 27, 2012

But What If He's Not So Good At His Job?

So there's this guy. His name is Jim and I know him through blogging. He writes a lovely little blog called Just a Lil Blog and his daughter Lily has autism. He seems like a nice enough guy, though he is always going on about sporns and bacon and orange juice. Don't ask.

Anyway, Jim posted on Target's facebook page a few weeks ago about the cashier he had at his local store. You can read the post, but the gist is that the cashier likely was autistic, and that Target was awesome for hiring him because they recognized that someone who might be a little socially atypical could still do a great job. And this post went all kinds of viral (it's up to about 820,000 likes), and was written up all over the place.

My local Safeway grocery store always employs several people with disabilities. This is a Good Thing. This past summer, there was a young man with a cognitive disability who worked as a bagger. Since I generally went during the weekdays when it wasn't crowded, he was often the only bagger working so I saw him a lot.

This young man was friendly and polite and definitely not good at his job.

It pains me to say it. But he just wasn't a skilled bagger. He was very, very slow. He would fill the bags too light and with no sense of organization. He would stop and comment on silly things in the cart, like the Tasmanian Devil on some juice boxes, and if I had one of the kids with me he would spend a lot of time interacting with them (not always entirely appropriately) instead of bagging. The cashiers were kind and helpful to him, but they also ended up bagging most of the groceries.

And I somewhat shamefully admit that I would, especially if my own developmentally disabled child was with me, avoid his line or use self check-out instead.

This feels me with great cognitive dissonance.

I applaud Safeway for hiring disabled people and I want them to continue this. And if that person needs a little extra time to do his job, it should be no big deal for me or anyone to spend a couple extra minutes in line. Let's be honest, I was just going to waste that time on Facebook anyway.

But sometimes a person just isn't cut out for a particular job. I bet there is a job this young man would be very good at, but it wasn't this one. And I don't know that we do anyone a great service by allowing him to remain in a job that he isn't successful at.

I'm new to the issues of disability rights. In part, it seems, it must be about showing people that a disabled person can do just as good a job as someone without a disability, reducing outright discrimination. But it is more than that, isn't it? Maybe it also means that we also have a responsibility to find meaningful ways for people to interact in the world even if they aren't especially adept at it. I don't know and I don't know where the line is between the two.

I don't see this man at the store any more. I don't know if he was let go. Perhaps he was in a job rotation and his time at Safeway simply concluded. Or maybe his supervisors helped him find work that was more suited to his skills. Whatever the case, I wish him well.

September 21, 2012

Explanatory Fictions, Behavior, and Sensory Processing

Many people with autism are also diagnosed with Sensory Process Disorder (SPD). Much like autism itself, diagnosis is not always clear-cut. We all, to some degree, have some sensory sensitivities or proclivities. But true SPD is more than that. We know from people who are capable of describing such things, that some people do process sensory "input," like lights, sounds, and touch, as well as movement and awareness of body in space, differently than people without SPD.

I don't know if Moe has SPD. I'm sure if you asked our Occupational Therapist, she would say unequivocally yes. If you ask our ABA Director, he might deny such a thing exists. And herein lies the challenge.

Moe is a sensory seeker. He loves to play with water and have his back rubbed and feet squeezed. He is calmed by swinging and gets riled up by spinning. He will occasionally do things like pull the grass and watch it fall very closely to his eyes. Everything goes in his mouth. He likes stronger flavors than most kids his age (spicy or sour) and seems to have a fairly high pain tolerance. As I write this, he is screaming, not out of any or frustration, but because it is a new "stim," or so it seems from the outside.

But how do we know he has a processing disorder? We do know he has severe language impairments. Without language to process the world, what is left but the senses? Moe can touch and taste and explore with his body. It is what he understands. He cannot connect to others with conversation, but when someone rubs his feet, that feels good and he likes to keep that going. That seems perfectly reasonable to me, not like a disorder at all, in fact.

Moe does have some sensory sensitivities, especially to the dog barking and to the sound of his little sister crying. His sensitivities are not extreme in that he can recover from them fairly quickly when the noise stops, but he is clearly bothered by those sounds quite a bit. I am too. Those two in particular make it very hard for me to concentrate. If the dog is barking, I find I absolutely cannot continue a conversation I'm having. I don't go running from the room, but I am also older and able to regulate my reactions better. Now I don't know if Moe and I fundamentally process sounds differently, but it is hard to diagnose a disorder based on hating two of the most annoying sounds known to man.

I mentioned the word "regulation." This is something Moe has quite a bit of trouble with. He can get very excited very quickly, and sensory input is often helpful in calming him down. A lot of what we do in OT is related to these regulation and calming strategies. Moe can also be quite impulsive. But again, without language or the sense that there socially acceptable ways to behave and not behave, and no way to ask for things beyond the few gestures and sounds he has, the line between sensory processing and behavior becomes blurred.

And this brings me to something I've come to learn about Moe, and about why so many of the techniques we've tried in the past with him may not have been successful. It is very easy to attribute Moe's behaviors, like grabbing, pulling, and biting, to "sensory needs." In his classroom, they would give him things like weighted vests, fidget toys, and chewies when he was acting out, especially during activities like circle time. And sometimes those things helped and sometimes they didn't. And when Moe used a "replacement behavior" like chewing on a pillow instead of a person, they claimed success and moved on. But they weren't addressing the fundamental issue.

How do I know that? Because it didn't stop the behaviors. In fact, it may have increased them. Imagine if you were trying to tell someone that you didn't like circle time, or didn't understand what was expected of you, and they stuck a heavy blanket on you. You might, for a moment, think, "this blanket is really comfortable." But then you'd realize that you are still in circle time and you still don't understand what you are supposed to be doing. And then you would be even more frustrated.

Sometimes, it seems Moe is unable to control his actions. He lashes out or spins wildly in his hammock swing or screeches, and I think he can't help himself. But by working this summer with some talented behaviorists, I've learned that he can. For example, Moe will often get aggressive when getting ready for bed. I could believe that when he is over-tired, he cannot regulate his system, and the deep pressure input he gets when he grabs me is his way to try to calm down. Or I could believe that he doesn't want to go to bed, and is acting out because that is his only way to communicate a pretty complex need. Or maybe the truth is somewhere in the middle. He's overtired, feeling cranky, and is hitting because he wants me to know that he doesn't like how he's feeling.

What I do know is that with the right motivation, Moe is able to control his response. If, for example, I let him have his iPod while I'm changing his diaper, he is calm. It is not just that the iPod gives him a place to focus. He will be acting out, and I can say "do you want phone? Show me nice hands." He will immediately calm. I can then say "please lay down." He will lay down immediately. I hand him the phone and we get through the diaper change quickly and easily.

I am not denying that Moe has trouble regulating his emotional response. I don't deny that he is a sensory seeker or that sometimes he gets so frustrated or overstimulated that a sensory approach is the right way to help him calm down. But we, as well as many who have worked with Moe in the past, have probably downplayed or misunderstood the behavioral component to his actions. We used what our ABA director called "explanatory fictions," applying a sensory approach to a behavioral situation, and as Moe gets older and his needs are becoming more complex, as he is asked to do more and has more reason to try to get out of completing taks, we are figuring out better ways to both motivate appropriate behaviors and attempt to extinguish inappropriate (aggressive) ones.

September 17, 2012

And Back Again

When Moe was two, he had 25 hours a week of in-home early intervention. At the end of that difficult year, I said I would never do that again.

This summer, we had Moe in a 30 hour a week in-home ABA program. I agreed because it seemed like a way to jump start his learning after two years of being enrolled in a preschool program with very little progress. And it was only ten weeks. At the end, I said I would never do that again.

And now, just three weeks later, I am doing it again.

It has been a hard three weeks that has affected all of us. Moe had a rough transition back to school. Behaviors that I had hoped would taper off after returning to a regular schedule escalated. We drove 50 miles a day to school and back, and each day on pickup, the report was the same: "Moe had a rough day." We added a dedicated aide. We adjusted Moe's daily schedule. We hoped it was just a transition period.

And this weekend, we made a decision. We took Moe out of school.

Of course, we consulted with a few people first. Jeff and I observed the class. And we could see that despite some really positive aspects, it was not going to suit his needs. They weren't set up for him. He was unhappy, in Moe's perfect storm of both bored and over-stimulated. And Jeff and I, through our research on schools last year, through the ups and downs and assessments and evaluations and so very many therapies (and therapists) have gotten good at knowing what is working for Moe and what isn't. Moe may simply not be ready for a classroom environment.

Moe had a good summer with his in-home ABA program. So for now, we are going to continue with this. As the end of summer approached, we considered whether we wanted to continue on or send Moe back to school. We thought the program would be a good complement to an afternoon ABA program. And even though Moe wasn't able to weigh in on the decision beforehand, his behavior told us he wasn't happy there. And we decided to listen to him.

I am nervous. It means I am, for the third time, going to be with Moe almost all of the time. He can be challenging, and I get the brunt of his frustration and aggression. Part of me thinks that if he is not ready for a classroom environment, isn't that exactly where he needs to be? How else will he get ready? But he really learns better at home in that one on one environment. He does great with repetition, and discreet trial type learning (though I know this isn't for everyone). And Jelly is the perfect typical peer for him, willing and eager to participate.

This time, it is different. There is no end time, no number of weeks or birthday that will mean back to school. But that also means no deadline. We will do this as long as it is working for Moe and go back to the drawing board researching schools for when he's ready.

This is the Right Thing, even if it is also the Hard Thing. But once again, I am left wondering if there will ever be a place in this world for Moe.


September 14, 2012

Not Sweating the Not So Small Stuff

It's the 14th of the month, and that means I'm over at Hopeful Parents today! Come read about something I'm not stressed about for once.



September 7, 2012


I dropped Moe off at school for the last day of his second week. My heart sinks when I leave him, and although I'm glad for the break, something hasn't felt quite right. It has been a difficult transition for him. Reports from his teachers at the end of every day have been consistently negative. "He had a rough day." "He seems off." Though of course it is a new placement, so they haven't really seen him on a good day. It hasn't helped that Moe has had a cold. New school, new germs.

Frankly, I haven't seen Moe on a good day in several weeks.

Moe has been aggressive lately, with increasing frequency and intensity. He scratches, bites and screams. His outbursts are brief and seem to come out of nowhere. Sometimes they are clearly frustration induced, so we need to get him a way to communicate with us. He is still so heavily prompt depended for communicating his needs. We have started the process for an intensive AAC evaluation at his new school.

Moe's behaviors have necessitated the need for a one on one aide for him at school. I was hopeful that this would help keep some consistency between his home and school programs, and help mitigate the aggressive behaviors. Yesterday was her first day with Moe. He bit her. She made sure to tell me that she had to get a tetanus shot and is on antibiotics. Of course I feel terrible. But isn't that why she's there in the first place?

I had hoped that being back in school and on a regular schedule would help. And Moe has been sleeping better, at least. But he is still lashing out at home. We are on edge whenever he is around. Jelly is afraid of him, flinching or moving away whenever he comes close. It breaks my heart, but I know it is partially my fault. I tell her "give Moe some space." I am afraid to take him anywhere. I wonder if medication would help, but I don't think we're there yet. I think Moe has learned that these behaviors get him something, and we need to figure out how to turn that around.

I feel at a loss over how to parent my boy. I am in over my head and am running out of places to turn. I am constantly on the edge of tears, and that is not helpful for anyone. Our ABA team is helpful and I want them to move in with us, but I don't think insurance would pay for that. So instead I am working on finding someone who has specific experience with aggression in non-verbal kids. That may or may not be someone from our current ABA provider. I really want Moe to be a success story, but right now I feel like we're failing him.


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