Things that need saying

November 21, 2011 Leave a comment

This blog is where I write primarily about disability rights, both from my job and from my own experiences as a person with chronic illness.

I  have a BS in psychology, with a concentration in cognitive and neuro psych. Since graduation, I have worked as a psychology research assistant, tutor, and as a caregiver for children with assorted developmental disabilities. This last is my true passion, and this blog is written largely on behalf of the wonderful children and young adults who are my clients.

A note: as they say, “the names have been changed, but the stories are real.” I have altered many details in my posts to conceal the identity of my clients as much as possible. And dialogue is generally not exact, as my memory is, well, memory. However, I have not made any of these stories up. These are all things that happened, both the good and the bad, the heartbreaking and the incredible. Such is life, particularly where children are invovled.

People Are Complicated

October 22, 2016 Leave a comment

Human beings are capable of logical, rational thought. But we are not inherently logical rational beings. We are emotional. We are complicated. We are self-contradictory. We are inconsistent.

It’s easy to forget this. We expect other people to Make Sense, by which we mean that we want to be able to understand the reasons behind people’s feelings and actions. And to some extent, we often can. We have the ability to emphasize, to imagine how we would feel in a particular situation and hence understand how another person in that situation feels. But we can’t always know someone’s situation perfectly. We can’t always imagine that situation accurately. And, of course, we don’t all have identical responses to the same things. We don’t always make sense to each other. We don’t always make sense to ourselves.

So I am amazed at how often I fall into the mental trap of expecting children to make sense. Children are, in fact, less likely to make sense than adults. They are also less able to reflect on, understand, and express the reasons for their emotions and actions. But many adults get annoyed when children act in a way that the adult can’t understand. 

It always amazes me how many adults seem to have completely forgotten what it was like to be a child, to have irrational fears and inexpressible longings and heartbreak over ordinary occurrences. Even though, as adults, we still have these experiences, only perhaps less often and more privately. Why does it never occur to us that a child might be crying because of the song playing on the radio, laughing at something they just imagined or remembered, or angry just because it’s been a long day rather than because of any specific event?

As with so many things, this expectation of an immediate and obvious cause for someone’s feelings is magnified in dealing with disabled children. I was at the beach with a 9-year-old nonverbal client today. We were walking along at the water’s edge when he suddenly began to cry.

I asked him what was wrong, although I knew he had no way to tell me. I asked if he was injured, hungry, cold, if he needed to go back to his Dad, if I could do anything to help… (While he doesn’t indicate yes or no, he will stop crying if I manage to figure out what he needs, so I try to list a number of possible solutions for him.)

When he simply continued to sob, it suddenly occurred to me to wonder why I was assuming a concrete and proximate reason. Maybe he was thinking about something that saddened or scared or worried him. His grandmother has been ill. He has a new baby brother. And there are a million things I don’t know that could be wrong. Maybe his parents had a fight. Maybe he has a mean teacher. Maybe his best friend isn’t in his class this year. Anything could be upsetting him.

And maybe it was something more immediate, but abstract. He spent a long time tossing a ball to himself today, and then we walked past a group of kids playing a ball game. Maybe he felt left out and wished that the other kids would play with him. Maybe he felt sad about being so different from the other kids. About not even knowing how to ask to join them. Perhaps he was just disappointed that he was walking with me instead of swimming with his Dad (they did go swimming, but not for as long as he wanted).

We found a bench and sat. His Dad came over and started running through the same questions I had– did he need a snack, a sweater…? He waved Dad away, turned his back. He told him not to cry, and, at my urging, went back to his swimming. 

“Don’t cry.” I hear that a lot, from many sources. It’s usually said in a sympathetic way, not a mean way. “It’s ok, buddy, dry those tears.” “Don’t worry, there’s nothing to be scared of.” “Aw… Cheer up, honey.” It’s a natural response, I think. We hate seeing someone in pain (there’s that empathy again). We want to fix it. We want to make it all better. And sometimes, we can. Sometimes sympathy and reassurance is enough. Love alone has dried many a child’s tears. But it can also hurt to be told that everything is ok when that just isn’t the case. So I’ve removed the phrase “don’t cry” from my vocabulary.

I put my arm around my client’s shoulder and sat with him and his tears. I spoke softly. 

I reminded him that he was loved.

I told him that everyone feels sad and cries sometimes. And that he would feel better eventually.

I told him I understand that life can be really hard, and that it was ok to feel upset about that.

I told him that I wished I knew how to help him feel better, but that sometimes it just takes time.

He reached over and gripped my hand. After a few more minutes, he stopped crying. He stood up and tugged me in the direction of the parking lot.

“Ok,” I said, “Let’s go get your Dad and tell him you’re ready to go home.” And we did. And also, I told him that he was a great kid and I love hanging out with him. I probably should have said it sooner. I’ll try to remember to say it more often.

Language Stories

No lesson here, just reminiscing. I have a client, age 13, with moderate-to-severe developmental disabilities. Very social, loves music, loves simple word games such as being asked what sound various animals make, or asking me my favorite color, etc.. I generally see her for 3-5 hours a week, and have done so for the past two years. And just the other day, I had a very disquieting thought. It occurred to me, suddenly, that I probably understand more of what she says than anyone else in her life. Which is both unacceptable and understandable.

You see, in addition to assorted other disabilities and delays, she has a very profound speech impediment. She sometimes uses an iPad to communicate, but not often, and not with much fluency. She prefers speaking verbally. And, provided I pay very close attention and have had enough coffee, I can understand perhaps 75% of what she says. I don’t think anyone else in her life gets more than 50%. Teachers and therapists aren’t in her life long enough to learn. Her parents, in addition to being very busy people, are not native English speakers. They speak English quite fluently, but when you’re trying to decode speech based on minimal clues, there’s no substitute for having grown up with the language.

It’s not just the fact that her pronunciation is hard to understand. There’s also her unique patterns of speaking. She tends to drop consonant sounds, even the few she’s capable of making when she really tries. She drops words out of her phrases, syllables out of her words. And she speaks in the way people jot down notes to themselves, where a few key words stand for entire thoughts or requests. This is where it’s necessary to know her very well, because even if she pronounced those words perfectly, much of her speech would still be utterly mysterious to someone who doesn’t know what she’s referencing.  There’s often quite a lot of guesswork even for someone who does know her.

If she comes to me and says “bus” (a word she can produce reasonably intelligibly), she might mean “I want you to make the sound of a bus” or she might mean “I want you to sing Wheels on the Bus.” Even if she says “I want bus,” I know she isn’t asking to ride on a bus. Sometimes for the song, she’ll say “duh bus” (the bus) or add the “round and round” gesture used in the song. Her BIs are working fairly intensively on getting her to give more information in her speech, so now sometimes she’ll say “sound bus” when she wants the sound. And if we’re already playing “make sounds of things,” it’s a good bet she wants a bus noise. She’s also pretty good with simple yes/no questions, so I can just ask. This is pretty simple. And many of her other shortenings are relatively easy to pick up, too: “A B song” is the alphabet song, “Gaga face” is Lady Gaga’s “Poker Face,” and what sounds like “Fie uh wayn” is Adele’s “Set Fire to the Rain.” “Uh dime it?” means “What time is it?” Some of her abbreviations make a lot of sense, especially for someone who struggles with pronunciation– cutting out articles and other words that aren’t as important to the meaning of what she’s saying. Others are less sensible and actually interfere with the meaning of what she’s saying. I don’t know if those happen because she doesn’t want to try and say certain words, or if there’s an actual cognitive disability in terms of her ability to recognize or remember or think in full sentences. Probably some of both.


Sometimes figuring out the reference is pretty hard. I often run though handfuls of guesses before hitting on the right one, and then I have to remember what that particular phrase means again in the future. Not as easy as it sounds, especially when many of those phrases are very similar, or sound very different from their correct pronunciations. When she asks “How was your day?” it often comes out sounding like “Wuh woo they?” I never would have figured out what it meant on my own; the BI who taught her that question filled me in on what she was saying, and I had to hear it a couple of times before it stuck in my mind. It doesn’t help that she sometimes ask “What’s today?” (as in, what day of the week is it), and it sounds pretty much the same. The way she says “color” is identical to how she says “flavor” (and I have no idea how to write it!). “White” and “grey” can both come out sounding like “why.” Something that sounded like a cross between “hammock” and “omelet” turned out to be a request for “Old MacDonald Had a Farm.” So I have to guess at what sounds she is trying to produce, what word or phrase or part thereof those sounds are meant to represent, AND what she’s trying to convey by using those particular words.

Sometimes she finds a way to give me clues, sometimes not. Once, she asked over and over for “ghee ew up,” to my utter confusion. My brain started trying out possibilities: Giddy-up? Something about horses? Do I know a song about horses that I’ve sung to her before? (Many of her requests are for songs, which at least gives me some idea where to start). Or maybe it’s something about getting up. Is she asking me to help her get up? “Give it up,” perhaps. Is that a song? It might be a pop song I don’t know; she listens to a lot of pop music. Maybe I’m assuming word breaks in the wrong places. The last two syllables could be “Europe.” All along, of course, I’m saying things like “I’m sorry, I don’t understand, can you tell me another way? What is it?”

Finally she added a gesture– clasping her hands and swinging them back and forth. She had to do that a few times before I finally was able to make the mental leap to a song we’d sung together a few weeks prior. She was asking for “London Bridge is Falling Down.” Really. Here’s the logic: her favorite line in the song is “Take the key and lock her up, my fair lady.” (And sometimes, when I’m feeling energetic, I hold hands with her on that line and swing our hands back and forth.) So she was quoting her favorite line, but omitting most of the words, leaving her with the phrase “key her up,” which I was only able to figure out once I knew what she was asking in the first place. Sometimes at this job I feel a bit like a cryptographer. Or a linguistic anthropologist.


Another time, she said what sounded like “WUH wiggen.” No clue. She said it a few more times, but I was drawing a blank. Sadly, I can’t get her to add information by asking things like “What is it?” or “Can you tell me more about it?” or “Can you show me on your iPad?” but experience has taught me that sometimes she can answer certain yes/no questions that help me narrow it down.

(And rarely, wonderfully, if it’s a song, she’ll try and sing it for me. Her singing is beautiful, but not much more comprehensible than her speech. She only ever pronounces the final syllable of any line, the rest being filled in with moderately accurate vowel sounds with “w” substituted for the consonants. And while she can hold a note pretty well if she’s singing along to the radio or YouTube, when singing alone she’s very quiet, and the melody fades the same way the lyrics do, only bubbling to the surface briefly in places. Still, I love her singing, and there’s always a special thrill when she hits a line in the chorus and I finally recognize what she’s going for and start singing it with her and her face lights up with a smile about a mile wide.)

But this wasn’t one of those times.

“I don’t understand. Is that a person?” I ask. Could she have a friend at school named Mulligan or Brannigan or something like that?

“WUH wiggen,” she repeats.

“A food?”

She says it again, “WUH wiggen.” I admire her persistence. And sometimes, if she says something enough times, my brain will finally match her sounds up to actual words. The cadence helps a lot. But sometimes, we both just end up frustrated. Sometimes I work to get her attention onto something else instead, if I really don’t have a clue.

“I’m sorry, I don’t know it. Pick something else.”

“WUH wiggen.” She’s starting to look annoyed, and I can’t blame her. Could it be a game?… An animal?

“Is it a song?”

“Yeah.” Finally, a clue! But I can’t think of any song titles that match up. It could be anything from a nursery rhyme to a new release. The odds are against me, but serendipity is on my side. I somehow finally parse the words as “love again,” recognize them as belonging to the line “we can learn to love again,” and cross my fingers.

“Just Give Me a Reason? Is that what you want me to sing?” And finally, there’s the smile. Phew! I think she heaves a sigh of relief along with me. I laugh at the utter absurdity of the mental journey we’ve both just taken in order to reach common ground. And yeah, I’m feeling pretty good about myself for figuring that one out.

By the way, the song is completely out of my range and I only know about half the lyrics. Ordinarily, I wouldn’t even try to sing it in the shower, much less where anyone can hear me. But I know that exchange was hard work for her as well as for me. I know it’s stressful for her to try over and over to make someone understand, with no guarantee of success. In short, she’s earned it. So I give it my best shot. Top of my lungs. And she smiles and smiles.


I wish more people in her life could decipher her speech too, but how could I ever explain to someone how to decode her communication? How could I teach them to seek out those mental leaps? I don’t even know how I do it, or how to improve. There’s no secret formula for this, no easy answer. I can’t tell you the number of times I’ve failed at understanding her requests. Innumerable apologies for innumerable disappointments. Or the times I’ve figured something out, and then forgotten it on another day.

I’m proud of the times I’ve succeeded. I’m proud of her every time she figures out a way to give me more information. The leap from just saying “bus” to saying “sound bus” is huge. I still don’t know that she could go up to anyone and say “sound bus” and be understood, but it’s definitely progress. I’m sure that eventually she’ll be able to say “make sound of a bus,” and then she’ll be able to request it from anyone, not just the handful of people who know her best. I’m looking forward to that day on her behalf.

We Are Not Amused: Problems with the First Person Plural 

September 19, 2016 Leave a comment

Today I’m writing more about language. ​I’ve been thinking about adults who say “we” when talking to or about clients or children with disabilities, as well as children in general. 

I want to acknowledge that different people have very different levels of education, English language fluency, and ability to monitor their own speech. I sometimes get frustrated with activists who seem convinced that you can’t fight for social justice without using exactly the right language– language that is unfamiliar to most people.

I am a very language-oriented person, and it is difficult for me to write simply (for example, the first sentence of this post was originally “Continuing with my prior theme of dissecting language…”). I’m trying to become more accessible, since my natural writing style is hard for many people to read and understand.

Back to the topic.

There is a tendency for adults working with the disabled to use unnecessary plurals: that is, to say “we” when talking about something the other person is doing. I’ve seen some understandably hostile reactions to this in the advocacy community. But I also realized that I do it sometimes. So I started trying to figure out when and why. 

People usually say “we” to small children, disabled or not. Sometimes it really is a plural, and sometimes not. I think it’s hard to see the difference with babies, because the adults do almost everything for them or with them. “We’re going you upstairs to change your diaper” definitely involves both parties. And sometimes the adult is really just talking to themselves. “Are we having a cranky day?” isn’t a question most babies will answer.  

Other times, it’s like the parent is talking for the baby. “We need a nap” really means “The baby needs a nap” (although I bet Mom would like one, too!). I think this way of speaking makes people angry when a non-disabled person is speaking for a disabled person. Autistic rights activists get particularly upset about phrases like “We’re having a bad day,” when the speaker really means that a child (or even worse, a disabled adult) is having a bad day. Of course, it’s often true that if a person is having a rough day, their caregiver is struggling as well. 

I’ve used “We’re having a bad day” when talking about my disabled clients, especially if they are present, and I thought about why. One reason is because saying “He/She is having a bad day” sounds a little bit to me like I am blaming that person, when the truth is that I’ve probably made some mistakes that contributed to their bad day. It also sounds like I am totally uninvolved, and that feels impolite too. “We” feels more inclusive. Talking about someone in front of them is different than talking about you and that person. It’s usually rude to say “S/He’s going to the beach” in front of that person, but it’s perfectly fine to tell someone “We are going to the beach.” Really, though, it would be best to say something like “Today has been hard on everyone,” or “I think she’s had a lot of frustration today,” or “He seems upset.” I can’t know exactly what they are thinking or feeling; I can only guess.

Sometimes”we” really means “we.” “We are going to pick up your toys,” can mean “You and I will pick up the toys together,” and that’s just fine. 

What really bugs me is when someone, usually a professional, says “We’re going to pick up our toys now,” or “We need to put away our shoes,” or “We need to finish our lunch,” or “We need to earn three more tokens,” when they really mean “you” in all those cases.  We don’t talk that way with typically developing children, even when we are talking about doing something together. We say “I’ll help you pick up your toys,” or “You need to eat your lunch,” or maybe “Let’s put away your shoes.”

Using “we” and “our” when you mean “you” and “your” is infantilizing. I remember, as a fourth grader, our entire class being horribly offended when a substitute teacher (who usually taught kindergarten) said “Let’s all follow Mrs. Spitzer to the cafeteria now!” She was guilty of referring to herself in the third person (of course, I have changed the name) as well as addressing us in the first person plural. 

Now, sometimes people do use “we” in instructions. If you watch cooking shows, you’ll hear things like “Now we’re going to put our cake in the oven” or “We need to cut all these vegetables up really small, because we want them to cook quickly.” And usually the speaker is giving a demonstration at the same time. This can work in a classroom or therapy session, as in “We can use a graph to show this trend” or “We can mix red and blue paint to make purple.” At least, it works as long as the teacher isn’t using that awful sing-songy baby voice…

The other way that it’s sometimes OK to use “we” is to make a general statement. When adults tell children, “We cover our mouths when we sneeze” or, “We need to share with our friends,” they mean “I do this and so should you” or “This is what people are supposed to do.” Making a general statement can take the sting out of being corrected. I have a client with Down Syndrome who reacts badly when confronted directly but is happy to modify her behavior when I phrase it as a general rule, such as “Young ladies say excuse me when they burp” or “Remember, we always say thank you for gifts.” But this method, too, needs to be done respectfully. 

As usual, my underlying message is about the need for respect. A good general rule is: If you wouldn’t say it to a non-disabled person, don’t say it to a disabled person. But that’s easier said than done. It’s hard, too, to speak in an age-appropriate way with someone who doesn’t understand the things a typically developing person their age understands. Remember that what goes around comes around: you can’t teach someone to be respectful unless you are respectful to them.

Literal Language, Again 

September 16, 2016 Leave a comment

Anecdote from today. I was out walking with a teenage client and her BI. We’re working on teaching her to cross the street safely– stop, look, then walk. She’s not particularly interested in learning this. She’s used to having someone else take care of it for her, and she’s generally unenthusiastic about any task that requires her visual attention.

We reach an intersection, and stop. The BI prompts her to look to one side and then the other.

“Any cars?” She asks the client.

“Yes,” the client answers, although the street is completely devoid of traffic.

Now, this may well have been sheer laziness on our client’s part. “Yes” is often her default answer, and she tends to be a bit lax about yes/no questions. I have a hunch that the reason for this careless approach is that it only ever takes two tries to get a yes/no question correct, so why bother thinking about it too much? You say”yes” and then you get told “good job” or “try again.” Big deal. 

(I also suspect this client of deliberately answering wrong at times during easy tasks in order to spend more time on those tasks rather than harder ones– a metaphorical “dragging her feet” tactic. So far, I seem to be the only person who has noticed this. On the other hand, she’s tricked me a number of times into helping her with a task that I later find out she’s perfectly capable of doing on her own.)
Returning from my tangent here: there is another possible explanation for her wrong answer today, and it goes back to what I said last time about precise language. Language has a lot of subtext and context, and we process them so automatically that we don’t even consider the possibility that our assumptions may not be obvious to someone else. The BI asked the client if she saw any cars. And there were plenty of cars– parked alongside the road. Is it possible that our client simply didn’t think about the purpose of the question and so misinterpreted the connotation?

“Are there any cars coming towards us?” I clarified. The BI laughed as she realized the possible misunderstanding. Unfortunately, our client’s attention had already moved on to other things, so I didn’t get a chance to find out if my rephrasing of the question was useful. 

This is one of many reasons that I really wish ABA practitioners would give their clients brief explanations of tasks and their purposes before starting each task. It doesn’t do much good to teach someone to look both ways and report on the presence or absence of cars if they don’t understand that the purpose of this activity is to decide whether or not it’s safe to cross the street. 

I might as well take a moment to point out that there are valid arguments on both sides here. Reasons to explain a task briefly beforehand include: 

  • The client might be able to judge how important this particular activity is for them (eg., they might be more attentive if they understand that the purpose is to keep them safe); 
  • The client might be less frustrated with a seemingly meaningless task if they can see that it is a step towards a larger goal;
  • Offering an explanation is a form of courtesy and respect, of treating the client as an intelligent human being and presuming competence. If they can’t understand the explanation, there’s really no harm done, while if they can understand it, it seems rather rude not to offer one.

Reasons against include:

  • Letting the client decide how important they consider a task can backfire, as children’s priorities are not always the most sensible;
  • There is the possibility that the way the explanation is phrased will create misunderstandings that interfere with learning the task;
  • On a related note, having the end goal in mind from the beginning might lead to the client skipping important steps in their haste to reach the result;
  • Caregivers and therapists have to be more vigilant about laying blame on a client who fails at a task despite having had it explained. It’s very hard to remember that understanding the rules/steps and following them are separate skills. Also that being able to repeat the reason for something doesn’t necessarily mean understanding that reason. (I am reminded here of an anecdote in the memoir “Following Ezra” that goes something like this: the boy steals something from a classmate. To discourage this, his father tells him that when he steals, he disappoints both his father and God. The boy memorizes this lesson… and comes home the next day to cheerfully report, “Hey Dad, guess what? Today I disappointed you and God!” He had learned the words of the lesson but not the meaning, or at least not the implication, obvious to most people, that disappointing dad and God is not a good thing. He wasn’t a malicious kid, just an oblivious one. Fortunately, his father understood this and tried explaining it a different way.)

So, this post got a lot longer than I intended, and now I can’t think of a clever way to wrap it up. I hope I’ve given you something to laugh about and something to think about.

We Need to Talk About Appropriate Language

September 7, 2016 1 comment

This paragraph was originally at the end of the post, but I think I should start with it instead. The purpose of this essay isn’t to “dump on” ABA people, teachers, or anyone else who has a disabled child in their lives. I’ve made dozens of mistakes I know about, and even more that I don’t, and I suspect I will continue to make mistakes. That’s why I want to remind you all to think critically about what you do and say and how you do and say it. Think about the words you use and the messages you give without words. Try to imagine the perspective of your students or clients or children, and if you can’t imagine it, read more stuff written by adults with disabilities.


It was a minor thing that got me thinking about language. I was watching a middle-school level nutrition lesson for a profoundly autistic boy, and overall it was a good lesson. But it contained the following line: “I am lactose intolerant, so I should stay away from dairy.” Although I  understand figures of speech very easily, I also often notice when the logical meaning of words is not the same as the intended meaning. So I thought, “No, he doesn’t need to ‘stay away from’ dairy, he needs to not eat it.”  There’s a difference. This isn’t a food he has a contact allergy to; it’s just something that will upset his digestion.

I’m sure this strikes most people as a ridiculously small thing to fuss over. But so often, even non-autistic children misunderstand what adults tell them. Most of us can remember being unreasonably afraid of something– or hoping for something impossible — because an adult said something we misinterpreted, took too literally, or didn’t realize was a joke. Sometimes we hold these misconceptions for years. For an autistic child, who tends to take language very literally, this probably happens far more often. Even the phrase I just used — to “take language” a certain way — can be confusing, as it uses the verb “take” in a sense that only exists in idioms (I am indebted to Judy Endow’s book “Make Lemonade” for this particular example, although in her case she was confused by the phrase “take care”). Often, the context corrects the confusion, and academic misunderstandings are rarely critical. But when a child is learning about their own healthcare, the language must be as accurate and precise as possible.


I’m also not sure how I feel about lessons given in the first person. When a client or student reads a social story designed to give instructions, it makes sense to think this way, as in: “I will put on my shoes before going outside,” or “When I have a question for the teacher, I raise my hand and wait until the teacher says my name.” Non-autistic people also use these kind of internal instructions. Examples include internal “pep talks,” meditation mantras, and self-reminders during a busy day (e.g. reciting “I have to go to the bank and then buy cat food”).

But it often feels weird to me when teachers or therapists write and read these sorts of instructions. Perhaps some of my objection comes from the fact that these writings often make statements about the client/student’s feelings or thoughts in a way that an outside observer cannot possibly know. Or they try to tell the student/client how to feel.

I ran into trouble with this recently. A preteen client was having difficulty waiting in line for the slide at the playground. If other children were ahead of him, he would often shove them roughly aside, and then had to be removed from the situation. Having witnessed this several times, I developed some thoughts about why this particular circumstance was so hard for him.

First, the playground we always went to was usually quiet, so there was rarely a need to wait for the slide. He didn’t expect the waiting, so he didn’t handle it well. The other problem was a conflict with another social rule he knew: saying “excuse me” when he needed to walk past someone.  This skill had been very heavily reinforced at home, where he otherwise tended to crash into people while running around the house. Generally, when he said “excuse me,” someone would step aside and let him pass. At the slide, however, he would say “excuse me” to the child in front of him, but they would not let him pass, and he would become upset. I suspect that he was angry: as far as he was concerned, he was doing the right thing, and it was the other kids who weren’t following the rules.

I brought these points up to his ABA team and suggested that he needed a social script about waiting for the slide (and then had to explain that a “social script” wasn’t necessarily a verbal script but could also mean an internal set of rules for handling a situation). I was happy to see, next time I arrived, that they had put together a little social story for him. I half-listened to them read it to him before one playground trip, and planned to read it to him myself next time. When I did, however, I discovered a few problems. The script went something like this:

“My name is Joshua. I love to go to the playground and go down the slide. The slide is my favorite thing at the playground. Sometimes I have to wait for my turn at the slide. Sometimes there are other kids waiting ahead of me, and they won’t let me pass them. That is ok. It’s important to wait for my turn even if I am excited. I will wait for my turn nicely. Here are some things I can do while I wait:

I can have quiet hands

I can count to 100

I can leave the line and come back later

When I wait nicely, my mommy and daddy will be so happy. I like making mommy and daddy happy. The other kids will be happy, and I will be happy, too! I am a big boy who knows how to wait for the slide!”

Yeesh. “Quiet hands” is the first problem, but I won’t dwell on it, as others have critiqued it far better than I can (and at least in this family I’ve only ever heard it as a response to hitting or pushing people). The counting idea is an excellent one. But when I got to the last paragraph, I couldn’t bring myself to read past the first sentence. What is this, “Brave New World”? It’s one thing to point out that waiting nicely pleases people; it’s another thing entirely to tell someone how they feel about this. And “I’m a big boy” — Seriously?? He may have a moderate-to-severe cognitive disability, but he’s still almost 13, not almost 3. This kind of language is downright insulting.

When his BI (ABA person) first read it to him, I didn’t pay much attention to the words, but was bothered by the sing-songy overly cheerful voice she used– again, appropriate only for an infant or very young child. I should mention that, on the whole, I love his ABA team. They are flexible, patient, focused largely on practical skills, and generally sensible. He adores them, adores his sessions, and is learning skills that make his life easier and more independent. They are also very fond of the term “age appropriate.” They want him to have “age appropriate” self-care skills, do “age appropriate” chores around the home, and be able to participate in “age appropriate” social activities (he is a very social person, and loves to be included in games and outings, so I’m not against this goal, although I do point out that he also has the right to play in a more “babyish” way when he wants to). They even talk about getting the rest of the family to treat him more like someone his age!

So, with all this focus on age appropriate everything, how about using age appropriate language and tone of voice with him? I use simple sentences and a limited vocabulary, and sometimes I use funny voices for his amusement, but I sure hope I never talk to him like he’s in preschool. So I go off-script and finish his social story with “When you wait nicely, we’ll all be proud of you, and you can be proud of yourself.” And I say it just like I’m talking to any other person.

I have no way of knowing whether this particular client is sensitive to these nuances of language and tone. For all I know, he may be perfectly ok with it. But I’ve heard from enough adults with developmental and intellectual disabilities to know that some disabled kids will definitely notice being talked down to. And that means it’s not ok to do it to anyone.

On the Subject of Weight Loss 

This is a little outside the realm of my usual topics, but it’s come up enough times now in conversations that I want to write about it.

There is a lot of heated debate right now about obesity: how it affects health, whether it is the result of moral failings, who should have the right to comment on it or define it, what to do about it, and on and on.

Disclaimer first:

I am not a healthcare professional or a professional biologist. At this time, I am relying on my memory for much of this information rather than doing due diligence and looking up the relevant studies, although I certainly encourage others to do so. All numbers given in this essay are for the purpose of illustration only: they are not based on any actual data. Also, please excuse my tendency to anthropomorphise biological processes: your internal components obviously don’t actually “think” or “want” things, but it’s a convenient way to describe what occurs.

All that being said, let’s see if I can address one of the most common misconceptions about calorie intake and body weight: the idea that there is a direct, linear relationship between these two things. There is not. I commonly run across the argument that anyone can lose weight by reducing the amount of calories they ingest. Some people claim that exercise is also necessary, but the general point always comes down to the idea that fat is caused and maintained by eating more calories than one uses, and can be reduced by reversing this behavior. But biological systems are a lot more complicated than that.

First, it is a mistake to consider calories fungible (or equal or interchangeable). Our bodies may process the same number of calories very differently depending on the form of those calories, which is why we have terms like “empty calories” (calories that don’t have much nutritional value) and “good” or “bad” carbs and fats (based on how we digest them and what their health effects tend to be).

More importantly, though, there’s also an incorrect understanding of what it means to need a certain number of calories per day. I often hear people say things along the lines of “Well, just figure out how many calories you use per day and don’t eat more than that.”

Problem #1:
What do we count as “using” calories? We don’t just burn calories when we engage in deliberate physical activities. Energy consumption is involved in everything we do– breathing, moving, thinking, growing. We use calories to repair injuries, replace damaged cells, increase muscle mass, go for a walk, digest our food, maintain our fat reserves, and to perform all mental activity, from deliberate problem-solving to emotional regulation to sensory processing. And it’s not easy to determine how many calories are needed for optimal performance of all these tasks.

Problem #2:
Your body doesn’t necessarily prioritize calorie allocation in the order that you’d like. In fact, one of the first things that gets cut back in a calorie shortage is brain-power. Your brain is a massive energy-hog, and evolutionarily speaking, we don’t need to spend much time on math and science and history and office politics and romantic relationships and social activism and keeping our temper when our boss is being a twit. We can pretty much get away with: Find food, find mate, don’t get eaten.

So when you have fewer calories to work with, the cutbacks start in the brain. You may have noticed this personally. When we’re hungry, we’re often grouchy and easily frustrated and have a harder time focusing and thinking clearly. But don’t take your own experience’s word for it. There’s a lot of research evidence on this– comparing test scores of students who have and haven’t skipped breakfast, impulse control in hungry versus sated people, and so on.

Problem #3:
Your body has its own internal settings– what temperature it wants to be, how much sleep it needs, and so on. And your body is willing to put a lot of resources towards keeping things the way they are. These settings include an approximate set point for weight, which is why there are people who remain skinny regardless of consumption and people who remain fat even with healthy diets and high activity levels. And why medications, illness, age, and other factors can drastically alter a person’s weight even if the person’s diet and habits remain fairly constant. Lasting weight change requires changing your body’s set point, and some bodies make this change more easily than others.

Generally speaking, it is hard to get your body to change the set point to a lower one… and relatively easy to get your body convinced that it should have more fat reserves. Excess consumption obviously has this effect– the body says “hey, let’s store some of this extra for later!.” However, cutting back dramatically on calories can also increase weight, because your body thinks “huh– I’m getting fewer calories than usual. We may be preparing for a drought, lean harvest, or other time of scarcity, and we don’t know how long it will last. We’d better save up as much as possible now.” Your body then boosts your hunger signals and again starts cutting calories from other areas of functioning. This is one reason why drastic calorie restriction diets do far more harm than good.

As I understand it, body weight maintenance is highly prioritized by our physiology– pretty much right after critical systems like circulation and digestion. And I suspect one of the reasons exercise is so important to weight-loss is not just how many calories it burns, but that muscle-building is one of the few causes your body ranks highly enough to actually prioritize over maintaining fat reserves.

Let’s look at a couple fictional scenarios illustrating the ramifications of all this. Imagine you consume an average of 2000 calories per day (the numbers and proportions here are completely fictional). Let’s say you spend 300 of those calories (about 1/7) on basic internal maintenance tasks, including maintaining your current body weight. Maybe 1000 calories go to mental activity, and the remaining 700 to physical activity.

You want to lose some weight, so you cut down to 1500 calories daily. There are several possibilities for how your body can react.

1) Your body keeps the ratios the same: 1/7 to keeping your body as it is, about half your calories for the brain, slightly less for voluntary movement. This isn’t too bad– you’ll lose weight slowly and have to put up with being a bit more tired than usual for a while.

2) Your body keeps putting those 300 calories per day towards homeostasis (including body weight), leaving you with only 1200 calories to be split between physical and mental activity rather than 1700.

3) Your body decides you may be facing a calorie shortage and increases the percentage of calories it turns into body weight, at an even higher cost to other functions.

4) Ideally, your body would trim fat without making any significant cutbacks in other areas, resulting in weight loss with no negative side effects. This is certainly possible, but it is far from being the only, or even the most likely, result of cutting calories.

In short, reducing intake alone is a pretty poor gamble to take if you’re trying to lose weight. The real trick is to get your body to change its ideas about how to allot your calories, and that’s a lot more complicated. Excercise can help, but isn’t necessarily sufficient. A more complete answer involves eating more nutritious food, increasing both physical and mental activity levels, and a bunch of other subtle epigentic factors that we’re far from understanding. We know that stress and general happiness have a huge impact, and so do sleep schedules. And there’s compelling evidence that eating a diet closer to the traditional diet for wherever your people came from can be a huge help regardless of calorie count. And so on and so forth.

It’s even harder to study all this than it sounds, since people who make significant body weight changes often have many of these factors involved, and the factors themselves can interact. When people get into exciting new relationships or more high-pressure jobs or experience other major life events, their stress levels change, their priorities change, their personal habits change, their mental health changes, other medical factors change… and it’s nearly impossible to untangle the order and magnitude of all these changes. Similar factors are involved in quitting smoking and other such things that require a fair bit of wrestling against the instinctual reactions of one’s own mind/body. So chances are good that the person who just “up and decided to lose weight one day” had life circumstances that played into making that decision, being able to stick to all the lifestyle changes necessary, and having their own biology respond in the way they wanted. 

This certainly isn’t to discourage anyone who wants to lose weight from trying; rather, people who want to lose weight and have failed with only diet and exercise may simply need to take a more holistic approach that prioritizes improving general wellbeing rather than merely reducing waist size. But it’s also important to acknowledge that we are very complicated systems, both physically and mentally, and some of the factors that affect our systems are generally beyond our awareness, much less our control. 

Categories: Disability Rights

Beach Days

It’s something of a cliche that autistic kids adore water, but you know what they say: a cliche is a cliche because it’s true.

Over the past few weeks, I’ve gotten to join several families on beach outings, and it’s always a wonderful experience. It’s fun to compare the experience of two clients in particular — two nonverbal autistic 9-year-old boys with very different personalities. 

The Flapmaster General is a “hummingbird” child — always in motion, full of energy, exuberance, curiosity, and, often, frustration with the rest of us who obviously can’t keep up with the world as he experiences it. He is desperate to communicate with the people around him, too. He uses a handful of spoken words now, clumsily and inconsistently, and is rather more capable with a speech device, although still only with very straightforward requests.
Flapmaster can spend hours happily playing keep-away with the waves, darting and dashing, giggling and shrieking, following each receeding wave down as close as possible before scampering back to dry sand just barely ahead of the incoming surf. It’s one of the few situations in which he can truly run as much and as quickly as he likes. 

I run with him, giving him his space but staying near enough to grab him if he tries to go into the water, or seems likely to crash into other people, or takes it into his head to go jump on someone else’s sand castle or steal their toys. (This particular day, he actually approaches another child and asks for “my turn” with the kid’s bucket and shovel. I am pretty impressed by this. However, since I can’t always just ask strangers to give him things, I take him to go fetch his own toys instead, and he seems happy with this solution.)

It’s a blazing hot day, and the Flapmaster scorches his feet on the hot sand when I take him to the bathroom. I should have thought to go find his shoes first. He firmly declines to step back onto the beach after this, so I, feeling guilty for my part in getting his feet hurt, offer to carry him instead, to much laughter and eye-rolling from the rest of his family, who think I spoil him. Which I do, whenever I get the chance, because he is an awesome kid who deserves to be treated like royalty on occasion.

On the boardwalk, he flaps excitedly at the seagulls for a long time, jumping and fluttering as though he too might take to the air at any moment. And then, to my great surprise, he selects a nice park bench and sits, just sits with me, holding my hand, for the longest time I’ve ever seen him be still. He is so relaxed, so happy.

Lest you think it’s all idyllic, I will mention that there was a fair bit of stress and drama on the long ride home, but what do you expect on a day trip with 4 kids in one car? In the end, tears were dried, spills were mopped, and various stops were made to solve various other problems, and all was well if rather behind schedule.

The trip to the beach with the boy I call Soundtrack was a very difficult experience. Just me and him and his mother on a grey and somewhat chilly day at a local beach. Soundtrack is even less verbal than Flapmaster, but a good deal more vocal, with loud exclamations amidst his verbal stimming, in addition to whistling, humming, and occasionally imitating bird calls. He isn’t as fond of direct interaction with people, either, but he’s affectionate in his own way.

​While his mother rests, Soundtrack and I play in the surf. Loud cries of joy burst forth amidst his usual humming as the waves crash. I encourage him to yell as much as he wants here where the wind and water scream with him. (He gets shushed a lot at home, understandably given that there’s a baby in the household). He has a strong voice, and people occasionally look over at him in surprise when he hollers. One girl about his age looks at him nervously. “Don’t worry,” I call over to her cheerfully, “he’s just excited!” Her frown clears and she goes back to playing.

To the dismay of many parents, a recent change to my company’s respite care rules states that I cannot be responsible for a client in water more than a few inches deep (ie, the shallowest possible wading). The liability concern makes sense, of course, and the ocean here is a very different one from the sheltered bays I swam in as a child. Most of these kids, in my experience, have a healthy respect for that danger, and aren’t actually likely to go in deep enough to get into trouble… but that’s somewhat beside the point. 
Soundtrack loves to jump in the wet sand. He often prefers me to stand behind him holding both his hands, as he plays. What he actually wants, really, is for me to wrap my arms around under his and lift him, “jumping” him over the waves as you would do with a small child. He is not, however, a small child — he’s quite a solid and large child and I could barely do this with him when I  met him a year-and-a-half ago. I make various attempts to explain this, but that doesn’t stop him from jumping up and expecting me to take his weight on the way back down. I do my best not to drop him too hard or pull any muscles… but I also try to do what he wants to the best of my ability, because he’s smiling, and that’s something I don’t get to see very often. 

As for being restricted to wading, clever kids know how to find loopholes in any rule, and Soundtrack is no exception. And he plans on getting the full ocean experience even if he isn’t allowed in any deeper than his ankles. First, he drops to his knees in the shallow surf so that he can see the waves at eye level. Then he lies on his belly in the “seal” position and does “the worm,” rippling his body up and down so that the incoming waves can wash under and over his body. Lastly, he turns about so that his feet face the ocean, and lies there kicking, “swimming,” as it were, in water 3 inches deep. I can’t help but laugh… but I’m impressed as well.

Later, his mother joins us in the water in order to take him a little bit deeper. With the water at our knees, she and I hold him between us, and finally he can pull his feet up and float on the waves. Next time she says she might try teaching him to boogie board, because I pointed out to her that he spent quite a while watching another kid on a board– and Soundtrack doesn’t look at people very often, much less watch them as though they interest him!

These experiences make me smile. I may come home exhausted, sore, sunburnt, or having been kicked and pinched multiple times… but when you come right down to it, I got paid to go to the beach, get some nice healthy exercise, and watch kids I care about enjoying themselves. Sometimes, this job just plain rocks.

Categories: Disability Rights