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Furthur nuances of ABA-based therapies

I’ve been seeing a lot of discussion online lately about ABA-based therapies.*

Can these therapies ever be done right? How can you tell when a therapy is damaging even though it is play-based, uses no aversives, and doesn’t seem unpleasant for the child undergoing it? Are stressful therapies ok in small doses?

Most people, including most of the ABA therapists I’ve met, agree that one of the most important things for any person to learn is how to say “No,” verbally or not. I’d like to describe two different ways I’ve seen an ABA technician work on this with an autistic client. On paper, the two ABA programs sound about the same (Note: (the people who perform the “therapy” sessions with the kids are trained by private companies and not licensed as healthcare providers or educators in any other way, to the best of my knowledge. Program supervisors generally require some form of degree in psychology). Similar stated goals and methods. But observing the techs in action reveals important differences.

Case 1:

The client is 11, minimally verbal (uses single words spontaneously and short sentences with prompting). Therapy consists of 2-hour sessions twice a week after school.

The tech treats the lesson plan casually. She and I and the client lounge on the floor of the living room, or go about the house working on various skills, most of them skills that are often taught by an OT or PT (dressing, using the toilet, preparing to go for a walk, eating a meal). At one point, the tech leans over and tickles the client lightly. The client pulls away a little, and the tech immediately prompts, in a friendly tone of voice as though giving advice to a friend, “You know, you can say ‘I don’t like that,” or ‘please stop,” or…”
“Stop, please,” says the client. The tech immediately stops, and smiles at the client,
“Thank you for telling me,” she answers.
This kind of exchange happens maybe once or twice a week.

Case 2:

The client is 7, mostly nonverbal, and has 2 hour sessions several times per week. The client is required to sit at a desk for most of the session, although some activities are done while sitting on the floor instead.

The client is engaging in a favorite activity at the table, mixing colors of play-doh together. The tech reaches over into the activity space, deliberately interrupting. The client pushes her hand away, and she ignores this, putting her hand back in the way so the client can’t continue playing. “nuh,” the child says quietly, sounding annoyed, not looking up, still intent on the activity.
“Stop,” the tech corrects, prompting him to use the specific word that has been pre-determined in his program as a “goal.”
“Stah,” mimics the client. The tech withdraws her hand, nods as if in satisfaction, and makes marks on her tally sheet, obviously grading the child’s performance. This process is repeated multiple times per session.

Case 1 isn’t perfect, but I think it’s a good shot at managing a necessary evil in a relatively decent way (the necessary evil being that, in order to make sure a kid knows how to object to things reliably, you pretty much have to provide or at least allow something they dislike for them to object to). The tech didn’t push, didn’t insist on a specific response, didn’t judge… just offered an alternative. The client was treated as a human being.

Case 2 makes me feel sick to my stomach. There’s no camaraderie, no politeness, no explanation, and not even a pretense of respect for the client’s wishes. Just training, and frustration. This is more “pure” ABA– no distractions, no additional variables, no unplanned interaction between client and therapist. But what upset me most was that the tech seemed to care only about reaching the objective, having the client perform to a pre-set standard, and not about whether or not the client was experiencing and understanding the power and value of being able to make a request and have it respected. There seemed to be no acknowledgement of the fact that the goal of the work (and the only possible acceptable reason or excuse for these therapies at all) is to provide the client with a skill that is, at least to some degree, useful to them. Communication that will be understood by others, no matter the format, is one such goal, and I think worth even some pain, though of course it should be the minimum of pain possible.

Missing from both is another crucial marker of respect: apologizing to the client for doing something they disliked. And, in a larger critique, it is very problematic that, in this world, someone saying “please stop” is more likely to have their needs respected than someone who simply pulls away, and someone who pushes someone else away is more likely to be labeled as “aggressive” than “self-advocating.” That needs to change. In the meantime, there are better and worse ways to teach someone how to lodge a verbal protest. I got to see both.

* Note: there’s a lot of confusion about terminology, especially in America, where anything that can plausibly, or even implausibly, be labeled “ABA” gets the title so as to be covered by insurance companies. The briefest overview I can provide is that Applied Behavior Analysis (ABA), a particular subdiscipline of behavioral psychology, has given rise to a wide range of “interventions” and “therapies.” The classic ABA therapy is an aggressive and rigorous program of DTT, based on the work of Lovaas, who wanted to make autistic people become, or at least appear, “normal”… and cure men who acted in any way effeminate or homosexual. Most autistic people consider this to be despicable at best and outright psychological torture at worst. More modern approaches such as PRT now apply behavioral principles in ways that are gentler, more flexible, more naturalistic, and more enjoyable for the client… but their goals are often (though not always) still based on the premise that becoming more “normal” in various ways is a reasonable goal for autistic children. Most autistic self-advocates and their supporters are deeply uncomfortable with this notion, too.

Interconnectedness, science, ABA, and autism

June 4, 2014 6 comments

[Quick amendment: the term “ABA therapy” actually refers to a fairly broad category of therapies based on the science of Applied Behavior Analysis, a branch of Behavioral Psychology. Because so many different approaches and programs are referred to as ABA, there is a good deal of confusion about the term within both the autistic community and the clinical practice. Generally, the ABA-based programs designed for use with autistic children seek to gradually alter specific behaviors (including actions that we ordinarily call other things, such as speech or eating), relying heavily on externally provided reinforcements, which are things that make a person more likely to repeat an action. A very simplified example: if you give a chocolate-loving child an M&M every time they say “hello,” the action of saying “hello” is likely to become a lot more frequent!]

[Second edit: Unfortunately, programs listed as “ABA” consist of everything from abusively rigorous training that teaches autistic children to suppress being themselves (classic/Lovaas-style ABA)… to play-based activities (such as Floortime and PRT) that focus primarily on the child being able to communicate their needs to their caregivers. Most “ABA”, even more unfortunately, falls somewhere between those two extremes, and it can be very difficult to untangle which methods are most problematic, and how, at first glance.]

***

I was talking with an ABA supervisor the other day, and she said something along the lines of “We know ABA works, and it works for just about everyone. We know because we’ve seen it.” And yes, ABA is a way to teach autistic children (or anyone else) certain skills. We’ve not only seen it, we’ve measured it and charted it and pinned it to the walls of innumerable institutions. But that doesn’t tell the whole story.

Because here’s the thing about science, and I say this as someone who loves science and has worked in research: In general, you’re only going to find what you’re looking for. And the ideas that are easily tested and easily measured, with results that can be easily quantified, are a lot easier to support than some broader, deeper, more complex ideas– the kind that are often critical to humanity. There’s a reason why most physics or biology books generally agree with one another, while most books on ethics or childrearing or religion do not.

Some things you can demonstrate fairly clearly with lab equipment and numbers. Others you can’t. This puts the quantifiable ones at a significant advantage in our culture. But does that mean they are better ideas?

***

ABA is the “standard” therapy for autistic children, because it provides results that are quick and quantifiable. Any observer, even an untrained one, can see the “progress.” The child learns to sit quietly for 3 minutes, learns to use a spoon, learns to ennunciate the word “cat” when presented with an image or the written word, learns to give a “high-5,” learns to request foods or other desired items by pointing to pictures, learns to say “I need a break” instead of tantruming, learns to say “nice to meet you” when introduced to strangers, learns to match a picture of a bed to a picture of a bedroom rather than a car.

Many of these are useful skills, yes. Many of them can be learned this way, yes. I do not object entirely to ABA as a concept (note that I am talking modern ABA– there are programs that use no aversives, include naturalistic settings, and do not rely entirely on DTT– not classic Lovaas-style ABA). ABA has its place. But that’s not the whole story.

[Another Edit: When I say that ABA “has its place,” 1) I am not necessarily recommending it for all autistic children. If anything, I think it should be more often offered to non-autistic children… and adults. And anyone who is thinking about adding it to their autistic kid’s schedule should speak to autistic adults who have had ABA therapy and learn what things absolutely need to be avoided in a therapist/program. 2) I’m talking about a few hours a week, maximum– the same amount of time you’d put your kids through any other stressful learning program like music lessons, advanced subject tutoring, or a very competitve sports program.]

***

By contrast, I would like to offer here the bane of many hard scientists: the anecdotal, subjective story (if it makes you feel better, you can call it a case-study). The author writes:

I knew how to read long before I could speak. There were no responses I made that would have given anyone any indications that I was reading. I even tore the pages and ate them because I wanted to keep the words. There was no way that anyone could tell that I was reading or not. I did not react or respond appropriately because I could not…

…Once I suffered Guillain Barre syndrome after an allergic reaction to a flu shot, and was paralyzed for a time. I couldn’t bat a fly on my face. My mom insisted on a homebound teacher, although I couldn’t even breath on my own and was unresponsive. The teacher came by and gave me an education that would have been the same as any other student my age. I could not respond. Did not respond. He could have been instructing the wall paper for all the indicative responses I gave. I was given tests even. He read them out and read out the multiple choice answers as well, going on to the next question without ever receiving any sort of reply.

Eventually he was gone. Never knowing he ever made a difference, perhaps wondering if it was just two hours a day of talking to himself. Actually he did some of this. Talking absently as if to no one was listening. Going through history and science and literature. But my mind drew pictures taking me to places he described. Discovering sciences. Such subjects that were never before wasted on me.

It was the best education I received. Without the teacher ever knowing that it meant anything at all. Like giving an education to someone in a coma never knowing if the other person is receiving the intended message….

…It was years later when I could express the remembered lessons.

 

Please reread that final sentence. Read it several times. Because it’s really important. And it’s not an isolated case, either. Time and again, autistic people report that, as children, they absorbed vast quantities of information that they could not express until much later. This is an important story. For the more data-driven among you, I refer you to the following scholarly articles: http://www.traininautism.com/Mottron/2007%20Dawson%20psychological%20science.pdf and http://www.epubbud.com/read.php?g=ET5HW22S&p=1.

My point is: just because we can prove that ABA “works” does not mean that it is the optimal or ideal strategy. It is, however, much easier to test and demonstrate the effectiveness of than, for example, lecturing a child on subjects to which they show no response or give incorrect answers for years before they are finally able to demonstrate their mastery.

***

A more important question than “is ABA optimal?” may be “what do we risk losing by using it as the primary method of teaching autistic children?” One obvious failing is that it takes up a lot of time– time (as well as effort and energy on the child’s part) that autistic students could use studying material more appropriate to their actual intelligence. Another consequence we can postulate is that such students may come to dislike studying or school environments, or may stop believing in their own intelligence (see self-fulfilling prophecy/Expectancy Effect). It is also, I suspect, common for ABA therapists, who rely on the ABA methods to assess skills and learning, to underestimate the intelligence and competence of their clients. The resulting inappropriate evaluations of children’s potentials may then lead to these children not being given the opportunities, responsibilities, freedoms, and academic access they need and deserve to move forward in life towards independent adulthood.

Are you worried yet?

ABA also fails to take into account that autistic children often show intelligence in quirky ways, and find creative workarounds for areas where they struggle. An ABA evaluation of language competence would likely be unimpressed by the child who barely ever speaks, but uses the word “spoon” to ask to go to Wendy’s for his favorite treat– eating a chocolate “frosty” (example adapted from a true story). The language is functional in that his family understand it, but is ultimately considered incorrect and won’t do him much good with strangers.

Perhaps you agree that it’s better for him to use the proper word, and perhaps it is. It certainly will make his life easier in certain ways if his language usage is limited to what the majority of his listeners can understand easily. But if we focus narrowly on teaching him to say only what others understand, would we stifle the incredibly creative and poetic language usage so many nonspeaking autistics develop? Emma’s term “motorcycle bubbles” (meaning fireworks) comes to mind, as does Tito Mukhopadhyay’s breathtaking metaphoric explanation for some of his unruly actions– “Thinking of apples and doing bananas” (quoted in the problematic memoir “Strange Son” by Portia Iversen).  The step before that might have been answering “apples and bananas” to the question “why did you throw that?”… a response which any ABA therapist would correct to something like “I was upset,” which in no way supports and encourages the child who is trying to make an important point.

***

Human beings are complex, chaotic systems, with a lot of interconnected bits that we don’t understand very well. Sure, you can look at the short-term and most obvious effects of something like a specific teaching strategy, but the more global, wholistic impact is harder to assess. A certain method of teaching history might produce high SAT scores, but ultimately result in a student who hates studying history, or becomes worse at critical thinking, or becomes obsessed with politics, or becomes embittered about humanity.

Perhaps this sounds a little absurd, but I’m really not reaching here. You can teach a child to be very obedient, which looks like a good thing when they eat their vegetables and do their homework, but then perhaps they become a rebellious teen and engage in dangerous behaviors, or get into an abusive relationship because they have lost the ability to say No. Yes, I’ve seen these things happen many times. Can I prove a causal link? No. Have I seen enough cases to make me worry about the most well-behaved children, the ones who never protest? Yes. You pull one string and find it connected to an entire spiderweb, a constellation of thoughts and traits and feelings.

***

Let me leave you with one last attempt to change your mind. I’ve used this metaphor before, because I feel it is apt.

There was a time, not that terribly long ago, when Deaf children in the United States were taught lip-reading and speech, and the usage of any kind of sign language was discouraged at best and heavily punished at worst. The prevailing notion was that this was for the children’s own good: sign language would make them stand out, wouldn’t be comprehensible to most other people, and would therefore prevent them from ever being able to fit into society. I suspect a lot of earnest research went into the best ways to teach lip-reading and speech to the Deaf– and it was a laborious, difficult process for both student and teacher which rarely if ever produced perfect results. Some of the best students, of course, succeeded marvelously and went far in life, and most learned at least something, both of which must have seemed to justify the continued practice… as well as reinforcing a lower opinion of those who did not succeed as well.

I’m sure it took a major shift in the thinking of authorities to finally realize that Deaf people who were permitted to use their own languages could do and think and express and learn so very much more. It would have been nice if they had started out by listening to Helen Keller (yes, amazingly, she did learn to speak, but only after she had learned tactile ASL), or an island community where almost everyone was bilingual in spoken and signed language. Maybe then they could have envisioned a future which included a Gallaudet University that graduates thousands of students, the beauty of Deaf-Jam poetry, and the realization that infants can sign long before they can talk.

I’m glad we got to that future. I hope the autism authorities will start listening more seriously to the autistic community, so that autistic children can look forward to a brighter future of their own.

Processing, communication, and cooperation

October 23, 2013 1 comment

Working with Rhythm today, I came to the realization that there’s a significant time lag in a lot of his responses that I suspect is common for autistic people (children and adults) and often gets read as uncooperativeness, inconsistency, or other negative traits.

Simplest example. I asked Rhythm if he needed a potty break and he shook his head “no” (he’s quite good with using the toilet, but regular reminders help, especially if his attention is on something interesting). A few minutes later, he signed “potty,” asking for a bathroom break, and I realized that it had taken him a few minutes to think about it, switch his attention from the current activity to focusing on signals from his body, realize that he was ready to use the toilet, and communicate that to me.

I’ve seen the same thing in other situations. I’ll ask if he’s hungry or thirsty and get no response– it seems like he’s ignoring me completely. But then within 5-10 minutes, he’ll ask for food or drink. And it often takes me a few minutes to talk him into doing something or switching activities. Getting ready for bed tonight was another example.

It was nearing bed time. He took me to the front door and said “muh!” which might have been a question about when his mother was coming home, but my best guess was “you want to go out and look for the moon?” which was rewarded with emphatic nodding– it’s so much easier to understand children once I know what things they like! We went out and looked for the moon, but it was cloudy out. Then I had to physically resist having him drag me off on an adventure for a few minutes before he finally agreed to go inside and take his bath (which isn’t usually a hard sell– he loves baths).

I rarely resort to using my adult strength against his, but it was partly a safety issue in this case, so I held him back while explaining that it was nearly bedtime and also we couldn’t just wander off at night leaving the house unlocked. For five or so minutes, you’d think he either wasn’t understanding me at all or just plain didn’t care, but then he stopped trying to get me to take him down the road and let me lead him back inside.

Caretakers, therapists, and teachers often describe this kind of behavior as “willful” or “stubborn,” interpreting these delays as the child is insisting on making their point before bending to the rules– and I think this is sometimes the case, especially in young neurotypical (non-autistic) kids. It’s necessary, to some extent, for children to do this– to assert their independence, to prove to themselves that they have some amount of decision-making ability in their own lives– although too much of it is definitely exhausting for caretakers (after all, we’re talking about the defining characteristic of the “terrible two’s” here– the “no!” phase).

But in autistic children, I think it’s important that we take into account the likelihood that the child is simply taking longer to understand, think about, and respond to what we say. And they are probably utterly bewildered (not to mention emotionally hurt) if they are punished or treated as a disappointment for not cooperating sooner.

Processing time. Response time. These things are not the same in autistic people as in neurotypicals. Many autistic college students have mentioned to me that they dread class discussions, or other situations where they are expected to respond to something within a matter of minutes after having the relevant material presented to them– to say nothing of the difficulty with breaking into a discussion when their attention is already completely dedicated to processing what others are saying, never mind coming up with thoughtful responses and navigating the subtle social cues of when to cut into the conversation. (There’s a truly excellent first-hand description of that experience here: https://thethirdglance.wordpress.com/2011/12/28/words/)

If we are going to design a world that works for autistic people– or even simply make the autistic people in our own lives more comfortable– we need to take these differences into account and remember not to jump to conclusions about someone’s thoughts simply because their response is delayed, difficult to determine, or changes after they’ve had more time to think.

Education, Control, and Abuse

August 7, 2013 1 comment

My apologies for the length of this post.

***

How do we teach children what they need to know in life? What do they need to know?

They need, at some point, some measure of self-control: the ability to delay gratification, to think before acting, to modify aggressive instincts, to consider the well-being and desires of others, and to endure things that are boring or yucky or uncomfortable, from sitting through class to going to the dentist.

Observe the average 18-30 month-old child, and you will see what people are like without this control. Toddlers are 90% “id” — desire unmodified by conscience or inhibition. They grab what they want, become violent toward anyone they disagree with, and refuse to cooperate with anything they dislike. You can’t function in society this way. (Well, you can, but you have to already have a lot of money and/or political clout, and you certainly won’t have many friends).

At the other end of the spectrum is the person who has been trained to completely sublimate their own will. As a society, we consider this more acceptable, even necessary at times. Anyone who joins the military steps into this role– choosing to follow another’s orders above all else. But that is an adult’s choice to make, with adult reasons for doing so. There’s a reason why you have to be 18 to enlist. Brainwashing children to do nothing more than follow orders is abuse.

***

Finding the middle ground is hard, even with typically developing children. Cultures and experts disagree about when and how to discipline children, and about what level of self-control they should be expected to have at what age (either physical, such as toilet training, or psychological, such as not talking out of turn).

Ideally, I think the modern-day parent imagines explaining every rule and its reason clearly, and the child responding “Oh, that makes sense” and following the rules from then on. But anyone who has spent any time caring for a child knows that this very rarely occurs. Inevitably, one is faced with a child who has preferences that are incompatible with their own well-being (e.g., refuses to eat healthy foods), the well-being of others (e.g., refuses to share), or the general necessity of a given situation (e.g., won’t follow classroom policies, won’t get in the car when it’s time to go, etc. etc. etc.).

We want, at least in this day and age, for our children to have minds of their own. But we also want them to comply with the majority of our wishes. Somehow, we have to find a balance.

***

When your child does something wrong, do you slap them? Yell at them? Reprove them gently? Order a time-out? Restrain them physically? Options get more complex as children get older. They can be sent to the school principal, grounded, given detention, required to apologize or otherwise make reparations, assigned more responsibilities, stripped of privileges, guilt-tripped, spanked, publicly humiliated, and so on. And although many parents insist they know exactly how to fix their children’s misbehavior, I won’t believe that until I meet a child who behaves perfectly… and then I’ll just think I’ve run across some sort of “Stepford Wives” style of mind control.

The science of behavioral psychology can help. We’ve demonstrated, for example, that children mimic what they see and hear. The injunction “do as I say, not as I do,” is probably the most useless phrase ever used in child-rearing. So if we want nice children, we should be nice people. But we also know (perhaps more anecdotally) that doormat parents bring up children who walk all over them (and everyone else). Being nice doesn’t do the job alone; you need structure and rules.

We know that rewarding desired behavior works better, on the whole, than punishing unwanted behavior. If kids hear “no” constantly, they start to tune it out, unless you manage to break their will completely. But punishment has its place too– if you ignore your child punching other children to get their toys, that behavior is not going to just go away on its own. Unless the other kids beat up your kid and they learns their lesson that way. Letting your child learn from the consequences of their mistakes is a good strategy in some cases, but not in all. You don’t just let your kid jump off the roof to find out that they’ll break a leg.

***

I think we can all agree that, at some point, too much or too severe discipline becomes abuse. We know that abuse does not have to involve physical harm, just as mockery and the silent treatment are genuine forms of bullying. But we can’t seem to agree on how to bring up good kids (any more than we can agree on what to do with adults who break the rules).

It’s even harder to know how and when to discipline children with developmental disabilities. It would be abusive to teach them nothing, and just let them do whatever they feel like all the time. Every person deserves the opportunity to work hard and improve themself; this is something human dignity demands of us. Every person deserves to be taught to be as independent as possible (note: independence is not self-sufficiency. Being able to decide what food will be placed in your mouth by an aide is as much an act of independence as being able to feed yourself). And every person deserves the opportunity to interact with others, to be a part of society.

It is on this last point, I think, where we get a lot of the disagreements between the disability community and certain parents and therapists of disabled children, particularly those on the autism spectrum. These parents and professionals assume that, in order to have good opportunities in life (social, educational, career), the disabled child must be taught to hide as many markers of their disability as possible.

Now, it is true that societies are largely unaccepting of those who break social rules and mores. So rigorous programs are put in place to teach autistic children everything from “keep your pants on in public” to “say please and thank you” to “don’t drool” to “don’t stim” to “make eye contact.”

And somewhere in there, well-meant intervention becomes abuse. It becomes “Quiet Hands” and pathologized childhoods. It gives the messages, however unintentionally, “don’t be who you are” and “you do everything wrong.” It results in teens and adults who are depressed and self-hating and feel guilty for their every instinct, habit and preference. People who don’t know that they have the right to say “no” even when someone is doing something terrible to them. Their whole lives have been a constant litany of others telling them what to do, how to act, what constitutes friendliness, when to smile– how can they trust themselves, or even know their own mind, after all that?

***

But how do we determine which things are worth teaching? I counsel parents to forget about their child looking or acting “normal” and focus on them developing self-determination skills, but somewhere in there, kids DO have to learn to keep their pants on in public or they won’t be allowed to go to school. Or someone will call CPS and claim that letting children run around without pants is a form of sexual abuse, because nudity is such a serious taboo in our culture.

It’s important, as I’ve written before, for children to be able and allowed to say “no” at times.  Two of the most important stages toddlers go through are “no” and “why?” Saying “no” asserts a sense of selfhood, the understanding that it is possible to have one’s own preferences and to control aspects of reality by expressing those preferences.

“Why?” occurs when children contrast their newfound independence with the fact that they cannot always control what happens to them. I believe that the question “why is the sky blue?” is not just idle curiosity, it is shorthand for “help me understand why I cannot make the sky be any other color.”

When children with developmental disabilities refuse to keep their pants on, we need to ask why. Perhaps they are reaching the “no” stage later… or the “why” stage. Because these children often can’t verbally ask “why,” no one thinks to offer them explanations, and their questions about the world go unanswered. Taking off the pants may be a way to ask “why do we have to wear pants?”

Or it may be a protest, to something related (maybe the child wishes to be toilet trained) or unrelated (the parent refused something the child wanted, so the child refuses something the parent wants). Often, parents of a disabled child assume that the child either fails to understand the rule “pants on in public” or is simply being obstinate. But it’s very important to establish what’s actually going on.

Chances are, the kid understands the rule—most developmentally delayed children understand more than is immediately obvious. Is the child then objecting to pants for the sake of objecting, or because there’s a sensory sensitivity issue? The first may call for some form of discipline; the second for finding a different kind of pants.

There are those in disability rights circles who think we should also take this as an opportunity to challenge the very concept of pants and view them as a source of oppression. I don’t disagree on principle (why should anyone be forced to wear pants anyway?), but change is slow. For now, if you want to go out in public, you have to wear pants of some kind. Or perhaps leggings or shorts or a skirt. If there is a battle of wills between parent and child, offering choices may allow the child to feel heard and result in cooperation.

There are hard choices involved in teaching and disciplining a child with certain disabilities. How do you help a child develop independence and self-confidence when the majority of things they do are “wrong,” even dangerous? How do you ensure that they have time to just be themselves while also making sure you provide them with enough training that they will be given as many social and educational opportunities as possible?

***

The beautiful girl I call Tangles provides a good illustration of this point. Tangles is 10, with diagnoses of global developmental delay, profound mental retardation, ataxic cerebral palsy, and possible autism. Her mother and I agree that she’s smarter than most people think, but so far she’s got very limited ways of expressing it.

She’s very friendly, and likes to approach people and animals and touch them. The problem is her ataxia, which means she has trouble controlling or stopping a motion once she initiates it. The result is that when she reaches out to get someone’s attention, she doesn’t touch them; she hits them. And she’s pretty strong for a 10 year old girl. Her attempts at “hello” are sometimes rough enough to make me wince.

Her family is used to it. Her mother corrects “gentle, please,” and “careful, honey” again and again. When I’m at the playground with Tangles and her younger sister Curls, Curls apologizes on Tangles’ behalf: “she doesn’t mean to,” and “she doesn’t understand what she’s doing,” and the kids they play with regularly seem to have simply gotten used to being smacked on occasion.

But this isn’t a sustainable solution. Tangles is getting bigger and stronger. If she hurts someone badly by accident, or even gets past the age where adults are comfortable shrugging her actions off, I worry that she’ll end up being restrained or sedated regularly. I can’t bear the thought of seeing that happen to this vibrant and loving girl. So somehow, for her own sake, she has to learn not to hit.

I suspect most behavioral therapists would train her simply to keep her hands down, to not touch others at all… but that would be punishing her for reaching out and trying to interact. What a heartbreaking notion.  What if it kept her from wanting to socialize at all? I can’t help feeling there must be another way.

I often remind her (usually right after she’s managed to thwap some poor startled person before I could grab her) that it’s not OK to touch strangers who aren’t expecting it, to touch little babies, to touch people without their permission. I don’t know how well she understands. I remind her to reach for people’s bodies rather than their faces. We work on “gentle touching,” having her stroke her hand along my arm rather than striking out in a slapping motion. But I think often she simply acts on impulse, forgetting to follow the rules that she does know intellectually.

The other night she hit Curls in the eye. Curls usually responds to her sister’s slaps with a mild scolding, and occasionally hitting back, so when she starting sobbing, I knew Tangles had managed to hurt her worse than usual.

“No! Don’t hit! Not in the face!” I reminded her. She was already wandering off as I continued exhorting her to try and be more gentle, and a casual observer would think she didn’t notice, let alone care, that her sister was crying. Her face was serene, and she continued with her normal activities.

But then I heard her saying “oh-oh” (her version of “uh-oh”), which is something she says when she’s upset, and I knew she understood what was going on and was bothered by it. She’s still officially “non-verbal,” and it’s relatively rare for her to actually try and say something, so I knew this was a big deal to her, too.

“Oh honey, I know you didn’t mean to hurt her,” I told her and gave her a hug. Then I went back to comforting Curls and applying an ice-pack to her face… but my deeper sympathies were with Tangles, who doesn’t even have a way to tell her sister that she is sorry.

How many things, I wonder, does she feel bad about without us knowing? How much does it hurt when we scold her over and over for something she doesn’t mean to do in the first place? Does it hurt her to hear people say that she doesn’t know any better, when obviously, she does know and is trying to improve? How do we teach her all the things she needs to know without convincing her that she is a broken human being in need of constant fixing? How do we support her desire to interact with the world while trying to change the way she does it? I can only hope we’re on the right track.

Fishy Goes to School

October 16, 2012 Leave a comment

Those who know me in person know that, in general, few things short of an impending apocalypse can tempt me out of bed before 9 AM. Today I was voluntarily up by 7 and out of the house at 8… so that I could go with Fishy to his school for the day (he does a half-day at a school that does “reverse mainstreaming”– a few typically developing children in with those with disabilities. Today his classroom didn’t have any “normal” kids, though, which meant it was more low-key and quiet).

It was wonderful. And seeing him fall over himself with excitement when I showed up at his house early was just to die for.

I wasn’t too worried ahead of time, because I know Fishy adores school, so they obviously aren’t mistreating him there, but I was a bit nervous about seeing other children and maybe witnessing some unintentional abuse in the name of therapy. But I didn’t see anything like that. The adults– a mix of teachers, therapists, and parents (or other caretakers like myself)– were respectful of the children, encouraging them, letting them play pretty much however they wanted, encouraging them in their skills. There was a lot of laughing and smiling from all the kids.

Only once did I see one of the kids relatively unhappy, being made to practice using a walker in P.T. [Physical Therapy]. I thought the adults should have been doing a lot more encouraging him and explaining /why/ this was a good thing for him to do. During Fishy’s walker practice, I not only enthused at him for every step, but also reminded him that soon he’ll be able to walk by himself, and can go places, and can walk to Mommy, and walk to Daddy… and so on. I have no idea how much of this he understands, but I figure it can’t hurt to remind him what he’s getting out of this hard work he’s doing.

I heard a few instances of “gentle hands” (mostly at Fishy, who tends to grab a bit hard when excited) but no “quiet hands.” A little too often, adults did things for children instead of letting them try, or rushed the children a bit in their own attempts, but for the most part all were given turns and encouraged to do as much of the activity at hand as they were capable of. And of course, I spent most of the time at Fishy’s side cheering him on and making sure he had everything he needed– which, today, was mainly lots of attention and affection. Everyone there has noticed that he’s been a little clingy since Baby Brother arrived on the scene a few weeks ago.

I was thrilled to see, during circle time, that the teacher went around asking each of the more mobile children to do a particular motion with him– clap, point, whatever, and when he got to Fishy, he said “let’s do the Fishy-flap” and had Fishy do his “I’m excited” arm-flap with him! Fishy was tickled pink, and so was I.

I attended an adaptive P.E. [Physical Education] class with Fishy, where we practiced various motor skills– some as a group, others particular to each child. He and I army-crawled across the floor together, and he practiced pushing himself around on a small rolling stool– first sitting up and pushing himself backward with him feet, then, at my request, face-down on the thing like lying on a skateboard. As I expected, Fishy liked that better because he could move forward.

He also got to use a “dynamic stander”– like a cross between a Sega and a wheelchair. The kid is strapped into it in a standing position, leaning forward against an upright padded surface, and there are big wheels to either side that the kid can push to roll forward or backward. Fishy seems to have the hang of it, but he gets tired easily. The kids also got to lie down and be bounced on a little blow-up raft thing, which apparently helps them build up muscle-tone (and which they love), and were physically guided through various exercises like “pedaling” their legs as though riding a bike.

I was gratified, and honestly quite surprised, to find that my affection for children with disabilities extends beyond Fishy. I got along swimmingly with all the kids that I interacted with, and they all seemed to like me a lot, too. There was only one fully verbal child there, who I found a little tiring (I have enough trouble parsing adult speech– child-speak is exhausting for me to try and understand), but who was also cheerful and fun. We played together with cars on the floor, and pretended to go to the beach.

I managed to pull this kid, Fishy, and another kid who seems to be a bit behind Fishy’s development level, into a little circle to play with some fist-sized plastic pop-beads. Talky was sorting them into piles by color, Fishy wanted to chew them and clack them together with his hands and rummage around in the bin full of them, and the third boy wanted to be handed them one at a time and throw them to me. All 3 kids enjoyed watched me spin them like tops. And when free play time was ending, I managed to get all three kids helping me toss them back into the bin. The other adults seemed frankly impressed with me. Heck, I impressed myself. I’ve never been this good with kids before. Is it possible that I, so incredibly focused on language from an early age, just communicate best with non-verbal children?

Am I really starting to consider a career in this? I wonder how special education pays…? [note: yes, I’ve heard. Poorly. I’m not going to rule it out on those grounds alone, though, provided I could get work in a positive teaching environment like the one I witnessed here].