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Posts Tagged ‘assumptions’

Fever Dreams and Philosophical Musings

Last night, I fell asleep with a mild fever. My life chased me into my dreams.

***
In my dream, my client breaks something while I struggle to help his mother in the kitchen. His ABA team makes him stay up all night cleaning, and in the morning a troop of therapists convenes to discuss how he needs even more ABA. I’ve met many of them before, but I’m having trouble telling them apart, and can’t decide which of them might be sympathetic to my objections.

I argue passionately for less ABA, more communication training. A supervisor sneeringly asks if I mean that faked “facilitated communication” nonsense. The scientists in the room shake their heads sadly. I respond that RPM leads to completely independent typing– look it up! I also point out that a lot of different things fall under the category of “facilitated communication,” mentioning a video I’ve seen in which the only “facilitation” necessary is a gentle hand on the back of the person typing. You can’t control what someone types that way, I insist– just try it! I volunteer to type while a scientist tries to control my typing with a hand on my shoulder. She cheats abominably, but still can’t force me to type what she wants.

The room grows fuller, as adults with physical disabilities arrive to make the point that being a disabled adult is not a horrible sentence. Almost every hand in the room is raised with points to make, and I have more to say but despair of being called on any time in the next hour…
***

Yesterday, in my real life, an ABA tech mentioned children who were getting 40 hours a week, plus other therapies.

I asked if she didn’t find that tragically sad– the idea of small children having to work more than 40 hours a week. She said she’d rather they had to do 40 hours a week now, and grow up to be functional members of society. (There was a time when I would have agreed with her. The ABA industry mixes up some strong Kool-Aid.)

I didn’t have a way to put my disagreements into words then– there were so many of them crowding my brain. I think I can do so now, though,

1) False dichotomy. There is plenty of evidence (some of it even in ABA studies) that ABA is neither necessary or sufficient for independent adulthood. In less technical terms: Some kids get lots of ABA and grow up to be independent adults. Some kids get lots of ABA and do not grow up to be independent adults. Some kids get no ABA and do grow up to be independent adults.

2) If you’re going to argue that ABA at least gives a better chance that the kid will grow up to be an independent adult, you’ll have to show me some darn good math. You’ll also have to take into account that scientific studies on autistic kids who grow up without ABA barely exist at all, and you can’t make a logical argument that one condition is better than another when you’ve only researched one of the two.

3) I’m also going to lay down some serious objections to the idea that a person needs to be a “functional member of society” in order to have a valuable and meaningful life. There are many people in my life who have inspired me, made my life better, or loved me, or who I have loved. None of those things has ever hinged on whether or not the person could earn a living, speak verbally, live independently, or pass as “normal.”

4) Even if I accepted the premise that ABA=independent adulthood, I would still object. Because, “functionality” at what price? The price of a childhood? An individual’s personality? Their self-esteem? Their happiness? I would not sacrifice any one of those things, and I have known and read about autistic adults who believe that ABA stole those things from them. That alone should give anyone pause– and I do think that if most parents and therapists and ABA techs were truly aware that this was the potential trade-off, they’d hesitate, too.

There’s more to becoming a well-rounded adult human being than learning to sit still or tie one’s own shoes or participate in social niceties. There’s emotional development, and I believe that childhood– an unfettered, exploratory, play-filled childhood– is an integral and irreplaceable part of that development. For counterexamples, look at the emotional damage done to children who lost their childhoods too early– to abuse, to war, to parental drug abuse, to any of the things that make children grow up too fast. There are an uncanny number of similarities between adults from abusive childhoods and adult autistics– and all too often, those are one and the same. And frequently, that abuse has, at least in part, taken the form of a relentless battle on the part of adults to turn the autistic child into something they are not and can never be– a non-autistic adult.

So, if those are my options, I will happily volunteer to change an autistic person’s diaper every day for the rest of my life, or cook their meals, do their shopping, help them cross the street, or whatever other “functional adult” tasks they can’t do alone. Because I love the children I work with, exactly the way they are. And while I do want to help them acquire as many skills as possible, I wouldn’t do it at the price of changing who they are, losing their sense of fun and humor, or making them feel that they aren’t good enough, or teaching them that behavioral control is more important than their comfort, their safety, their right to communicate naturally, and their happiness.

Suggested Questionnaire for Healthcare and Related Professionals – please share widely

October 27, 2014 7 comments

[Update!! Those who want a tool similar to this can download one for free from http://autismandhealth.org/%5D

I have heard many complaints from autistic people and other people with disabilities about their struggles in communicating with healthcare professionals, etc.. I propose a simple questionnaire for professionals to use. These would be standard intake questions, and the answers would be put at the front of the patient/client’s chart.

If you like this idea, please take this quick online survey!!!

If I get enough positive feedback, I will try to make this tool become a reality. I don’t know how, but I will try. Please help me spread the word.

https://docs.google.com/forms/d/1JB2s5dQxtZNLxP7CwbPFtQzU4-3QT6htxjYNhNpIssA/viewform

(If you have trouble wti the survey, you can also comment here on facebook: https://www.facebook.com/notes/open-discussion-on-autism/suggested-questionnaire-for-healthcare-and-related-professionals/789224341139804)

Communication, Attention, and Priority

November 24, 2013 1 comment

I need to remember how often, when a child doesn’t seem to understand what I am telling them, the real issue is that they are simply focused on something else, something they consider more important. This is true of all children– they focus on what matters to them, sometimes to the exclusion of everything else around.

How often have you heard a parent giving the same instruction time and again to a child who is playing — “don’t run!” or “use your indoor voice!” — only to see the child forget over and over as they get completely lost in their activity? Not to mention the things children ask over and over — “can I get one? Please? Pleeeeease?” or “are we there yet?” — to the frustration of parents who simply don’t understand that this question is ALL that is on their child’s mind at the time.

***

The other day when I arrived at Rhythm’s home to watch him after school, he dragged me down the street to a neighbor’s house. I already knew that he likes this house– they have a dog, and a rubber dinghy in the driveway that he loves to touch and rub and thump to hear the sounds it makes, and stairs up to the front stoop (he loves stairs, especially outdoor stairs). It appeared that no one was home at the time, so I was willing to let him romp around their front yard.

***

Usually, when he and I go walking, I struggle to find a balance between letting him enjoy exploring his own way and not letting him bother other people or do anything that would result in a confrontation with the neighbors. So, I’ll let him come up someone’s front walk and examine the architecture (he loves archways), but not knock on the door or walls. I let him press his face to the window of people’s cars but not their houses. I let him cross lawns but try to keep him out of flowerbeds.

He either doesn’t understand or doesn’t care about any of the boundaries and concepts of “private property.” Of course– I’m one to talk! As a child, I regularly snuck into other people’s yards to play. I didn’t have much experience with not being allowed into places, and I don’t think Rhythm has either. At home, he goes into all the rooms at will and has to be stopped from bursting into the bathroom to say hi to whoever is using it at the time. It isn’t surprising that he doesn’t understand privacy in that case– after all, he never goes to the bathroom alone, so why would anyone else?

***

At the neighbor’s house. We peered in the back gate by the boat. Rhythm tromped up the steps towards the front door with me in tow, hanging back a little reluctantly. They still had Halloween decorations and fake spiderwebs up in their front stoop, and he seemed to enjoy looking at those. Then he tugged my hand towards to door, meaning that he wanted me to open it or at least knock.

“No, we can’t,” I explained, “We haven’t been invited. Also, I don’t think they are home right now.” We repeated this process a few times– him wandering and looking around for a moment, then trying to get me to knock at that door. Me, telling him that we aren’t supposed to knock on people’s doors unless they have asked us to come over and visit, that it isn’t polite.

This kind of persistence is typical for Rhythm, and as I said before, for other children as well. The difference, when I work with nonverbal children, is that I don’t know how much of their persistence is due to various factors. In addition to the intensive focus that children give to their desires, it is entirely possible that:

1) They don’t understand that I am saying “no,”

2) They don’t understand WHY I am saying “no,”

3) They believe that I don’t understand their request,

4) They actually ARE asking for something different than I think, and/or

5) They have a counter-argument to the stated reason why I refused their request, but don’t know how to express it.

We tend to ignore those latter three possibilities with nonverbal children, and this is a problem. We easily assume that these children don’t understand us, when it is equally likely that we are failing to understand them instead. Verbal children can explain further if they perceive they are being misunderstood, and they also like to negotiate — “I promise if we get a puppy I’ll feed him every day!” or “Can I stay up for just ten more minutes? How about five?” or “I won’t be scared by that movie!” or “If you let me go to the party, I won’t ask for anything else ever again!”.

Nonverbal children, on the other hand, generally lack the ability to use that level of nuance, and are stuck simply making the request over and over in the hopes of getting their point across. And yes, it is possible that they are simply being stubborn– as all children are, at times– but we should not assume that this, or lack of intelligence, are the only explanations for their persistence.

***

I have a wonderful example of Rhythm using a counter-argument with me. I was getting him ready for his bath one night and he gestured, quite clearly, that he wanted me to get into the tub with him (presumably to make waves for him. He has me do this in the kiddie pool in his yard so that he can watch the water move, and I supposed he had no reason to assume that the bath is any different). Glibly, I answered “I can’t get in the bath with you, buddy! I still have my clothes on.” He very nearly rolled his eyes at me. Then he reached over and gave the hem of my shirt a quick tug, the way I do when I start undressing him. His meaning could not have been more obvious– “Ok, silly! Take your clothes off and THEN get in the tub.” He must think I’m not very bright sometimes!

I tried not to laugh– it was such a sensible response from his perspective. I wasn’t ready to try explaining propriety to an autistic 7-year-old, so I just told him, “Sorry, it’s against the rules for me to take a bath with you.” The experience definitely taught me a lesson about making flippant excuses! Now I always try to give him the most honest reasons that I can think of for why something has to be a certain way.

***

Rhythm had given up, for the time being, on trying to get into the house and was walking on the low stone walls around the flower beds. He adores balancing on any sort of ledge or narrow pathway, including ones quite high up in the air, and generally holds my arm or hand to brace himself. He usually has a pretty good sense of what’s within his abilities– although he also has a tendency to terrify his mother with his idea of “reasonable” risk! He was making a strange sort of throat-clearing/coughing noise and I asked if he was ok, thinking maybe he had gotten something scratchy in his throat. He ignored me, but seemed happy enough.

Eventually he led me around to the other side of their yard, where there was another gate in the fence. Again, he tried to convince me to open it — very persistent! I started the explanation again: We can’t just go in, it’s not polite, we haven’t been invited, etc., etc.. when my attention was caught by another odd noise. At first, I thought it was geese honking, perhaps migrating for the winter, and I looked up but couldn’t see any birds. Then I figured out that the sound was coming from somewhere beyond the fence, and wondered if Rhythm had noticed the sound before I did and was curious about it.

“Are there geese in that yard?” I wondered aloud, amused. I was mostly kidding, but Rhythm’s head shot up, and I realized I was on to something.

“Wait– do your neighbors keep geese??” I asked him. He looked at me intently, not confirming yet, but definitely wanting me to continue guessing.

“Not geese… ducks?” No response. He was still waiting for me to figure it out.

“Chickens?” He nodded excitedly. “Chickens!” I practically yelled, “Your neighbors keep chickens?!” He grinned.

Then something else suddenly made sense to me, too.

“Is that what you were doing before? I get it now! You were making chicken noises! Because you wanted to see the chickens!” His odd throat-clearing noises hadn’t been perfect chicken imitations, but they were pretty darn close, and far more realistic than the “cluck cluck cluck” noise that chickens make in all the kids’ songs he listens to.

***

And there you have it. I have no idea whether Rhythm listened to my explanations about why we couldn’t visit, or whether they made any sense to him. But I do know now that he was trying to tell me something, too, and I almost missed it because I was so focused on getting my message across. I assumed that I knew all the relevant information, and so I didn’t pay attention to the fact that he was trying to communicate with me. Or rather, I knew he was communicating, but assumed that his message was more simple than it actually was– just “I want to visit this house” in general, not specifically “There are chickens here and I want to see them.”

We didn’t get to see the chickens that day. I explained that we’d have to come back another time when the owners were home. With the promise that he would get to return and see the chickens at a later time, he let me lead him back to his house for a snack. I have no idea whether he would have been more reluctant to return home if I hadn’t ever figured out the purpose of the visit– but I certainly wouldn’t blame him if that were true! Disappointment is frustrating enough without the added misery of knowing that your request was never properly understood in the first place.

So I will try to remember to check my assumptions, and to put at least as much effort into focusing on what children are trying to tell me as I do into trying to get messages across to them. Mutual respect and mutual understanding– these are the bonds that humans build with each other. Empathy, compassion, collaboration, cooperation: all depend on taking the time and energy to discover what is important to someone else.

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.

Making Mistakes

(Sorry for the length of this post!)

My first few times babysitting Tangles (10-yr-old girl with global developmental delay, possible autism, ataxic cerebral palsy, and seizures) made me realize just how new I am at all this. I made mistakes, lots of them. I learned a lot, too.

The first hurdle was changing her diaper. I’ve changed Fishy, who is super-cooperative– lifting his legs for me and generally helping out as much as he can. I’ve also changed a typically-developing toddler who fights it every step of the way, screaming, grabbing for anything in reach, flipping onto his stomach, trying to run away the instant the diaper is off, sticking his hands into a dirty diaper if he can– a real handful.

Tangles’ mom demonstrated the changing procedure for me, once, before she left. She put her hands on her daughter’s shoulders and said “down!” and Tangles politely lay down on the floor and stayed still while mom mimed a diaper change. So, when getting Tangles ready for bed, I put my hands gently on her shoulders and said “down, please!” She just stared at me. I pressed down a bit, repeated the request in a few variations, told her it was time for a change, asked if I could change her diaper, etc.. No response. I started to worry.

Curls bounced over to us. “I can help!” she said. “Ok!” I agreed, assuming she knew something I didn’t about the exact right tone or phrasing to use, or something like that I was missing. Instead, she tackled her sister around the waist and tried to pull her to the ground. I stopped her quickly, imagining the much larger Tangles toppling over and squashing her little sister completely. But now I was at a loss.

I wheedled and pleaded. I tried using a commanding tone of voice. I held Tangles’ hands and gently explained that this was important. I pushed on her shoulders a little harder. No luck. I began to panic a bit. Silly as it may sound, it hadn’t actually occurred to me before that I might ever have to force one of the kids I work with to do something. I had this ridiculous image of myself as the Disabled Child Whisperer, always capable of getting the response I wanted through patience and good humor.

***

I’m sensitive to the difference between discipline and abuse, and to be honest I tend to lean away from discipline as well. I believe in enforcing rules and structure, but not in punishing children for the fact that they don’t have much self-control yet. The kids I work with are incredibly eager to please (well, apart from the one typically-developing toddler!), and I’ve never seen them do anything “wrong” on purpose. They make mistakes and I correct them, but I’ve never seen malicious or senseless behavior, and if they balk at doing what I want them to, I tend to assume they have a good reason and try to figure out what it is before moving forward.

I’m aware, too, of just how scary it can be for a child to be manhandled by someone bigger and stronger than they are. I hate the thought of overpowering a child, particularly a disabled child. They have little enough control in their lives as it is.

I also hate the thought of children being trained to be utterly obedient. This is, I learned recently, one of the primary reasons people with intellectual and developmental disabilities are at such an incredibly high risk for sexual abuse (something like 80% of these women and 60% of the men experience sexual abuse—and 90% of those endure more than one instance, with more than one abuser)—they are taught to do what they are told, without question, and are never taught that they have the right to control their own bodies and what is done to it.

I sat down with Tangles’ mom one night to discuss this, because I am scared for her. Tangles is, statistically speaking, in the highest possible risk demographic for sexual abuse. Fortunately, her mother is a strong woman, intelligent, and well-educated, which mitigates that risk. Tangles is a beautiful child and I hate to think about anything bad happening to her. But making sure that it doesn’t is going to require vigilance and much education for everyone involved in her care.

***

So, in a way, I was relieved that Tangles didn’t just trust me right off to undress and change her. On the other hand, I felt it would be irresponsible of me as a caregiver to let her go to bed in a soiled diaper. I also didn’t have much time and space to think—I had two rambunctious girls on my hands and it was already past their bedtime. Finally, to my relief, when I took her hands in mine, Tangles leaned back, putting her full weight on me (just playing, or trying to control the situation? I wondered), and slid down to the floor.

When I went to take the diaper off, she knocked her head against the ground—not hard, but deliberately, obviously telling me she wasn’t entirely comfortable with the situation. I promised myself that in the future, I’ll have a trusted caregiver oversee the first time I help a child with their intimate needs, to reassure them and to make sure I’m getting it right.

Then I broke another rule by saying one thing and doing something else. I apologized to Tangles for making her uncomfortable, but kept doing the thing I knew she didn’t like. I even told her that she was absolutely right, that no one should take her pants off or touch under her diaper without her permission, but the words were hollow because I was insisting on doing exactly that. I felt horrible, even though I talked to her throughout, step by step, letting her know when I was going to wipe, roll her to the side, etc., so that at least nothing I did would take her by surprise.

In addition, there was yet another problem I hadn’t prepared for—I wasn’t sure if I knew how to do this right! It’s been over a decade since I changed a girl’s diaper, and that was a baby. Now I was faced with a near-pubescent girl, and, in the midst of trying to figure out how to reassure her, my mind was racing with practical questions—did I remember to wipe front-to-back only? Am I wiping too hard? Not hard enough? It feels so different from when I’m wiping myself. Are the wipes too cold? How do I get the clean diaper under her when she’s too heavy for me to just lift her lower body? Am I hurting her physically or is she just emotionally uncomfortable? How would I know?

She didn’t fight me at all—I think I would have given up if she had, and called her mother– and made no protest other than those gentle head-bangs, but I still considered the situation unacceptable, and promised myself I’d never let something like this happen again.

***

Unfortunately, my troubles weren’t quite over yet. My instructions from mom were to get the girls changed into night-clothes before bed. At this point, I should have skipped that, but I was too frazzled to think beyond following the steps that had been laid out for me. So here I had just finished traumatizing this poor girl by changing her when I was still nearly a stranger, and a few minutes later, I was trying to take off her top, too.

She bonked her head against me, and said something that sounded like “oh!” or “oof!”—obviously a “No!” I took my hands off her, explained what I wanted to do, and tried again. More head-bonking. I asked if she wanted to do it herself. Bonk! I pointed out that her sister had just let me change her into a nightie. Bonk! I reached for her again and she put her hands flat against my chest and pushed me away. I let her.

She tried to run past me out of the bedroom, and I realized I’d screwed up again—I didn’t want to restrain her, but there was still broken glass on the floor in the living room where she’d knocked over and broken a jar earlier, so I couldn’t let her just run where she wanted, either. I compromised by letting her push me backward down the hallway, so I could let her feel in control and still make sure she didn’t go anywhere dangerous. At one point, she moved her hands up to my neck rather than my chest, and I froze in horror—not afraid of her choking me, but wondering where she had learned that, if she was imitating something someone had done to her. I still have no idea, but the thought gives me chills.

Once she realized I wasn’t pushing back, she calmed down. Finally, she let me take off her top and slip a nightgown over her head. Her sister helped her into bed and I rubbed circles on her back. As suggested, I gave her a book to hold, which she chewed on and tore at while I read to her sister. I tucked them in, and gave Tangles a stuffed animal to snuggle with. And then I went off to clean up broken glass and revise my opinion of myself as someone who knew how to handle disabled children.

***

Our relationship has gotten so much better since that night—I’m now not only “trusted” but firmly in the category of “favorite people.” She’s still not always thrilled to have me change her, but I suspect other factors are involved, since she seems thoroughly comfortable with me in most ways, including letting me help her bathe. I’m sorry that learning my lesson had to involve distress on her part, and I hope that I deserve her forgiveness for my mistakes, and for sharing a story about her that contains such personal information. I write these details only in the hope that my experience will end up helping others understand how to be more appropriate with the children (or adults!) they care for.

Things That Are Difficult to Say: More about my first impressions of Tangles

I wasn’t, at first, going to write about this here. I was going to keep this blog for writing about Disability Rights and Disability Positivity and The Right Way To Do It. I wasn’t going to talk about my mistakes, my second thoughts, my doubts… not in public, anyway. Not because I was ashamed, but for fear of hurting feelings, and because I wanted my readers to believe that it is possible to be a perfect advocate, one who always gets it right.

But that isn’t fair and it isn’t helpful. You need to hear not just my conclusions about disability, but about the journeys that took me to them. You need to hear my mistakes and my failures. So I’m going to admit to something unspeakably horrible here, something that I need to apologize for.

Recently I introduced you to a 10-year-old girl I call Tangles, who has ataxic cerebral palsy and mixed partial seizures, and diagnoses of global developmental delay and profound intellectual disability. But I didn’t write down all of my first impressions… that first entry carefully avoided the intense uncertainty I felt after my first few evenings with this girl and her sister, whom I’ve dubbed Curls.

I enjoyed spending time with Tangles. She was lovely, and sweet, and fun to play with.

But I kept looking for something more. I kept wondering how much she could understand, what was really going on in her mind… and if she really had a mind at all. A terrible, dark part of me kept asking, “what if she really is as stupid as her doctors think– a pretty, empty shell? What if there’s no one THERE? How would I know? Am I anthropomorphizing– imagining the existence of a personality and an intelligence where none exists? What if she’s thinking nothing at all? What if, for all my talk and beliefs and writings about equality and the rights of the intellectually disabled, I am wrong, and there are people who really don’t have any kind of mental potential? What if she is capable of nothing but simple needs and wants and mindless imitation? What is it that makes a person a person, and does she have it?” This train of thought ate away at me, kept me awake at night.

I am sorry, so sorry for ever thinking those things.

I am sorry for forgetting the rule: Presume Competence. For thinking that her intelligence was something that I had to see before I could believe in it.

It’s very easy for me to follow this rule in the abstract. I get angry every time I see the title of the news report on Carly Fleischmann (an autistic young woman who first communicated by typing at age 13 after her parents had tried numerous other communication methods with her to no avail): “Autistic Girl Expresses Unimaginable Intelligence!” “NO!” I think every time, “Her intelligence is not only imaginable– it should have been imagined and believed a lot sooner!” That was my first, immediate reaction to her story. So why is it that, face-to-face with a pre-verbal 10 year old, I had trouble imagining that she was intelligent? Or rather, how is it that I imagined her to be intelligent and then was afraid that her intelligence existed only in my imagination?

***

Allow me a philosophical aside here, and before I begin, let me remind me that the following are my personal views. I know many of you will not agree with them, but I hope that they will not cause you to lose respect for me. They are still open to debate, much pondering, and possibly major changes. I know that I have much to learn. This is the best I can do with what I know thus far.

I do not know what it is that makes human beings unique. I believe that we are, and that the reason why has something to do with our brains and how they work. I am a firm skeptic. I do not believe in a soul, or in anything else intangible that contributes to how special we are. I do agree with Immanuel Kant that every human being is invaluable, that each and every one of us has an intrinsic worth that is due solely to the fact that we are people. I believe that the human spirit, the result of who we are and what we think and do, is an extraordinary and glorious thing that is precious beyond words. But that still begs the question of what constitutes a “person” in the first place.

Because I do not believe in any supernatural thing that distinguishes a person from a nonperson, I tentatively conclude that the functioning of our brain is a critical factor. Because of this, I believe that a fetus whose brain is not yet developed enough is not a person (I still don’t know exactly what “enough” is). I believe that a person who has suffered brain death is no longer a person (note– this does not mean that it is ok to disrespect the body that is what remains of this person. One of the oldest traditions of the human species is that we treat our dead with respect). Treading a dangerous line with the disability rights community here, I find myself unsure that a fetus born with anencephaly (missing the majority of the brain) is a person either.

How much of a brain is required to make a person into a person? I don’t know. Definitely more than the brainstem, which provides only for breath and heartbeat. A human body is not enough– nor is it necessarily a limitation on personhood. I’m a science fiction fan who is interested in medical ethics. I ask myself– is a person whose genes have been artificially altered still a human? How about a cyborg? Is an android a person? The famous Star Trek episode that addressed that question (“Measure of a Man”) came to a disquieting and brilliant conclusion: we can’t prove that an android is a person. But neither can we prove that a human being is a person. At the risk of dehumanizing all of us, we must err on the side of assuming personhood rather than asking that it be proven. Which is, if you think about it, the basis of the rule: Presume Competence. The one I just failed at so spectacularly.

***

As a skeptic and a scientist, I am loathe to believe things without ample evidence. I was raised with spiritual beliefs, though not much in the way of religious dogma. Most of them did me no harm– some of them, I think, did. But nowadays I generally lean towards the notion that believing untruths is usually a bad thing, no matter how comforting they are. And I was afraid that seeing Tangles as a person was merely a comforting untruth.

But what does my scientist brain really say about people like Tangles? Everything I’ve learned about neuroscience so far suggests to me that anyone with cerebral hemispheres and a neocortex (essentially, those whose brain has developed past the point of anencephaly) is capable of sensing, learning, and cognition (thought). It has also taught me that we lack the tools to measure the potential of that learning and cognition, and that medical science tends to err on the side of assuming people — especially disabled people– are less capable than they truly are.

I have seen so many examples– like Carly, like Fishy, like numerous personal friends of mine, like the extraordinary woman I met not long after meeting Tangles (I’ll tell you about her in a separate post), like the cast of the documentary “Wretches and Jabberers,” all of whom have proven the experts wrong and shown that they can think and learn and do far more than the experts thought possible.

And in almost every one of their stories, there is a haunting question that hangs over me: How much more could they have done, and how much less might they have suffered, if only they had been offered the right tools and educations to begin with? If people had believed what they could not prove and presumed that these people had the potential to be something other than simple automatons, trained to do boring and basic tasks? How many more brilliant — or average– minds are wasting away now in institutions, or strapped to chairs in special education classrooms that don’t really believe they can learn? How many of them will never reach their potential simply because no one believes that they can? What if Tangles is one of them?

So let me conclude by saying that we should always, always, always err on the side of assuming intelligence, personhood, and unlimited potential. If we treat a person as though they have these things, and it turns out that they do not, then no harm is done. If we treat a person as though they do not have these things, and they do, then we have done terrible harm. So I will assume that anyone who is alive is a thinking person, worthy of the same respect as any other. Because anyone who is capable of thinking should be given every opportunity to learn, grow, and reach for the stars.