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Just Amazing

Sometimes my job is difficult, frustrating, or annoying. Sometimes it makes me feel like the luckiest person in the world. This day was the second kind. And not just because I got to wear a bathing suit to work!

***

Less than a year ago, I would arrive at his house, pile into the car with him and his mother, and buckle his seatbelt for him. We would drive from place to place– park, playground, and so on– and try at each place to get him out of the car for some exercise and fresh air. Sometimes he would come out and play. Sometimes he would refuse to leave the car at all. Sometimes he would sob and claw at me or pull my hair. This never made me angry, but it did make me sad. Sad because I hated for him to be so unhappy.

Today I arrive at his house and he whoops with excitement. I lay out some laminated photos on the counter– beach, playground, pool, park– and call his name. He comes over, and without hesitation taps the picture of the pool.

“Ok!” I say, “We’ll go to the pool.” He grins. We get ready and head out to the car. By the time I get there, he’s already in his seat with his seat belt buckled, ready to go.

When we arrive, I ask him to carry his lunch box while I carry his backpack. He does.  We pick a bench and put down our belongings. He kicks off his sandals and runs into the pool. I don’t need to hold his hand. I join him in the water and watch him while his mom takes care of the toddler. 

***

He’s in a great mood, and is eager to interact with me (sometimes he wants to enjoy himself all alone and that’s ok too). He tugs my hands and tucks them under his arms. I bounce him up and down in the water to the best of my ability (he’s grown so much in the past two years!). I spin him around, and we both laugh with delight. I push off the wall of the pool with my feet, and after a few minutes he imitates me– another thing I couldn’t imagine him doing last year. We work together to find different ways I can hold him and move him in the water. He’s so relaxed, so happy, so affectionate. He could easily swim by himself, but he wants me to hug him, put my hands under his back while he floats, roll him over and over.

***

I notice him watching a younger boy who is practicing swimming underwater, pinching his nose with his fingers. I suggest to my client that he try it too, and explain to him about the need for exhaling or holding his nose so he doesn’t get water in it. In response, he dives, blowing bubbles like a pro. Obviously, he’s known how all along. What’s cooler is that he was displaying that knowledge for my benefit– letting me know that he knew. When I first met him, he seemed uninterested in communicating with me except to make requests.

***

He watches a group of kids his age playing catch in the water. This is another recent development– he used to ignore other children completely. I encourage him to join in, but I can’t blame him for hanging back. Only once have I witnessed him really playing with another child, and it was an autistic boy a few years younger than him. Seeing him watching this game, my heart aches for him. I know what it’s like to be the kid who can’t figure out how to participate, or is too afraid of rejection to try.

I get him a ball from his backpack, and he plays with it by himself for a few minutes while I stand by the edge of the pool watching. Then he tosses it out of the pool. This usually means he’s tired of playing with a thing, but on a whim I pick up the ball, call his name, and throw the ball back at him, expecting him to ignore it. To my amazement, he turns to look, reaches up, and catches it. 

“Wow! That was great! Throw it back!” I suggest enthusiastically, cupping my hands. He pauses a moment, not seeming to pay attention… then gives the ball another gentle toss out of the pool, but not really in my direction. I retrieve it and throw it, and again he catches.

“Throw it right at me this time,” I say, and again he seems to be ignoring me at first, but a few moments later the ball lands at my feet. The next time it almost makes it to my hands and I cheer as if he’s just hit a home run. 

I’m grinning like crazy. He’s playing catch with me. It’s beautiful. I don’t care about him doing this to be more “normal” or because it’s what the other kids do. I care because he’s having fun and he’s sharing that fun with another person. 

I’ve never before seen him choose to do any kind of structured activity with another person. Never seen him do something that involves taking turns, that involves this level of response to someone else’s actions. I want to grab the people next to me and tell them they are witnessing a miracle. I want to call the national news. I can’t imagine being any more excited if he were my own son.

***

It’s a day full of moments like this. He swings on the rope dividing the pool into sections. 

“Off the rope, buddy,” calls the lifeguard. He doesn’t respond. I call his name, and he looks up.

“Leave the rope alone please” I call, and he lets go of it immediately. His mother and I have always suspected that he understands most if not all of what people say (in more than one language, too). But only in the past 6 months has he started regularly responding with actions that make it clear that he understands. 

In response, I’ve completely stopped using the short, simplified sentences that I often used when I wasn’t sure of his comprehension level. Now I just talk to him like I’d talk to any other preteen, chatting about all kinds of random things.
Later, a few other kids are playing on the rope, and the lifeguard again instructs them to let go. To my surprise, my client also looks up at the sound of the lifeguard’s voice, seemingly alert to the possibility that he’s done something wrong. I reassure him that he’s ok where he is and he goes back to playing. 

His awareness of everything around him seems to be growing by leaps and bounds. Or perhaps he’s always been paying attention but hasn’t been able or willing or interested in responding. Whatever the change, it means I no longer have to hover over him and, for example, physically drag him away from that rope. It allows him more independence.
***

By now, I’m sure any autism parent reading this is dying to know how these changes were accomplished. So first, let me point out that he is no less autistic. All these wonderful new things he’s doing, he does them while stimming and shrieking, flapping around, sniffing and tasting things that he probably shouldn’t, and having meltdowns over tags in his clothing. He is and always will be autistic. But he is becoming a more communicative, interactive, cooperative, friendly, self-confident, and independent autistic person, and to me, that’s the true measure of success. And the best kind of success.

Because there’s been no special diet or medication or new therapy. In fact, most of those things were discontinued completely over the past few years. He has made these changes himself, with the support of the adults around him. 

Some of his independence came of necessity. There have been a lot of life changes for him that were totally unrelated to autism. One grandparent died and another moved away and his mother had a baby. As a result, there were a lot fewer adults tending to his every need or making demands on him, which gave him both more freedom and more responsibility. He’s matured a lot emotionally.

The other thing that happened is that he’s gotten some autistic adults in his life– first me, then a man who has a remarkable knack for visual communication. There wasn’t any lenthgy teaching involved– they’ve worked together for no more than a dozen hours. But somewhere in those few hours, there was an “aha moment” for both my client and his mother as they finally zeroed in on a method of communication that both could understand. There’s still a long way to go before he’ll be able to tell us more than a handful of things, but the breakthrough has happened and now he knows that it’s possible for him to make himself understood in a way that he never could before. Since that realization, I feel he’s become much more interested in learning new things.

I think it was crucial for him to meet adults who were somewhat more like him, who intuitively understood thimgs about him that his parents and teachers and therapists did not. It doesn’t take much. The vast majority of his time is still spent at home with his family, and his mother also provides the other crucial ingredients to his success: unconditional love and constant encouragement.

Accept. Love. Encourage. 

Keep accepting. Keep loving. Keep encouraging. 

Celebrate every new attempt, no matter how unsuccessful, every step forward no matter small. Not the fake programmed encouragement of tokens or rewards or empty praise, but genuine appreciation for the effort you see a child making. Acknowledge difficulty and setbacks. Children learn best when they feel safe and supported. When they are learning because it enriches their life, not out of desire for praise or fear of disaproval. Learning is its own best reward. Success builds confidence, and confidence leads to trying new things, and trying new things leads to more success. 
***

Here are things I say to him often:

Try.

You can do it.

I believe in you.

Try again.

Thank you for trying.

I’m proud of you for trying.

I know it’s hard.

You’ll get there. I know you will.

You can do it.

That’s better.

You’re making progress.

Keep trying.

It’s ok to fail. 

You can try again later.

You’re wonderful.

You’re the best.

You make me happy.

Keep trying. You can do it.

I love it when you _____.

***

Unconditional love. Unwavering acceptance. Unending encouragement. They are magic ingredients.

As I drive home from his house that afternoon, the radio plays a song that always makes me think of my clients. As Billy Joel sings “I love you just the way you are,” I find myself crying. I cry in happiness for the wonderful children in my life and the joy of seeing them grow and learn. I cry in sadness for every autistic child who doesn’t have unconditional love and acceptance. I cry because I am lucky to know that perfection, like beauty, is in the eye of the beholder, and I wish more people understood that. I wish every person in the world could hear those words when they matter most:

“Don’t go changing/ To try and please me…. I want you just the way you are.”

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Struggling/For the Children

July 9, 2015 1 comment

I haven’t written much here lately. In part because my general brain energy has been at a low ebb, and partly because it’s gotten harder. Looking back at my older posts, sometimes I feel sad at how they now feel naive and optimistic in some ways.

My job has gotten harder. Not because of the clients, but because of the rest of the world. Parents, therapists, siblings, barriers and obstacles, institutions of thought and culture and society… And it’s much harder to write about my work when I have things to say that aren’t as positive. Sharing the good times is easy. Sharing my mistakes feels useful to myself and others. Sharing my good ideas is gratifying. Talking about the hard parts is… hard.

I know the parents of my clients love them greatly. I know these situations aren’t easy for anyone involved. But I need to write the following letter. I’ve been needing to write it for a while now.

A quote comes to mind: “The names have been changed, but the stories are real.” The following was inspired by many situations, with many different children.

***

Dear Child,

Once, while jumping, you accidentally head-butted me so hard that my jaw throbbed for a week. Hearing an adult call you “stupid” in a moment of anger hurt worse….

…You bit me, hard enough to bruise, and while the other adults clustered around asking if I was ok, I was worried about you, and what could have made you miserable enough to injure me…

…You frustrate me at times. You throw tantrums, throw objects, break things, hit and kick. I’ve lost my temper and yelled at you on more than one occasion. But nothing you’ve ever done has made me as angry as when your sibling wished– out loud, in front of you– to be an only child…

…You’re rougher than you mean to be, and your clumsy attempts at friendly interaction have made me wince all too often. What feels worse, though, is the fact that I wince or flinch against my will– I don’t want you to know that you hurt me, because I know you never mean to. I’d happily suffer more pain to see you smile…

…Once, after a therapy session, you punched me in the stomach for taking away the cookies. Your small fist didn’t hurt me. The pain and frustration in your eyes, however, left a wound that still hasn’t healed. I would rather be punched again than see you cry.

All of you: you have my sympathy, you have my unconditional love, and you have my complete forgiveness for any injury you have ever caused me. And you always will.

New Clients

As always, I am so very behind on stories of my kiddos. Sadly, Rhythm has been moved to another care program (I believe he now has a nurse attendant) due to increased seizures. I do miss him. In the meantime, I have two new autistic kids on my roster– a moderately verbal 11-year-old girl with a relatively uncommon genetic disorder, and a 7-year-old boy with a diagnosis of classic nonverbal autism.

I quickly became one of the 11-year-old’s favorite people. Among other reasons, I like one of her favorite singers and can sing her most famous song fairly well. I am going to call this girl Euterpe, after the Greek muse of song, because she is passionately obsessed with music, particularly pop songs with female vocalists. I spend most of my time with her singing, or else making other sound effects on request (animals, vehicles, you name it). She lives with a typically-developing sister, whom I’ll call Calliope (muse of epics– she does love to write!), and a mother who seems to be in a state of perpetual motion, effervescing with ideas, plans that change every few seconds, and a humming, cheerful energy. I find her overwhelming from a sheer sensory standpoint. It’s a good thing Euterpe is someone who primarily seeks rather than avoids sensation!

I’m just getting to know the 7-year-old boy, but I find him immensely charming already. He buzzes around the apartment– climbing, touching, observing everything, never still, flitting like a hummingbird from one entertainment to another, hands a-blur in the air. His high, clear voice echoes the words others use in perfect intonation but an octave higher. He seems to want to take in the world– touching everything, getting on top of or above everything, and always bouncing, bouncing, bouncing… then concentrating intently on a single activity that catches his attention– a table full of playdoh, shapes to cut out of paper (his fine motor skills are amazingly good), cogs that fit together, a youtube video of Thomas the Train. He has a slightly older brother and a mom and dad. His parents are very affectionate with him, and his mother seems to know him very well in the sense of being able to predict his actions and moods in that way mothers can, but I get the feeling no one quite understands him, which makes me sad. I’ve sat through one ABA session with him and wound up more or less hating the behavioral technician. Euterpe’s ABA tech is much better, and her supervisor is pretty excellent as people in these programs go.

I’m also working with a 10-year-old girl with Down syndrome, which is a very new experience for me and not at all what I’m familiar with. She’s a very determined and independent young lady, and fortunately, I mostly just have to keep her company, which involves letting her lecture me on every topic she can think of and drag me around by the arm like a favorite doll. She’s a bit on the bossy side, and I’m working on figuring out how to assert myself with her without being confrontational. I’ll admit– having kids who argue back when I ask them to do something (instead of giving me a simple yes or no of some kind) takes getting used to!

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.

Appreciating my job

October 13, 2013 Leave a comment

I wish I had the time and brain-focus to write about every single time I take care of “my” kiddos. It’s a wonderful experience and I get so much from them. Sadly, I’ve been realizing just how temporary a pleasure it is. Not only do children grow up so quickly, but this job isn’t exactly permanent– for me or for the families I work with. Fishy’s family has been so busy I haven’t seen them in months, and Tangles’ family moved out of the city a month ago. I haven’t had a chance to see her since, although her mom and I remain in touch and apparently she’s doing very well at her new school. I miss them both terribly, though, along with Plumpkin, an actual baby I’ve been babysitting lately, whose family has also just moved.

My most fun lately has been spending time with Rhythm. I generally care for him in the late afternoon and evening, and it’s often after a frantic day. When I’m worn out from far too much verbal input (i.e. conversation) for my comfort, drama, and/or chasing a toddler around, it’s wonderful to be able to relax with someone who just wants to sit quietly doing soothing repetitive activities. I’ve begun to feel like babysitting him is downright therapeutic for me! Even on our most stressful days, he’s such a great kid that I always leave his house with a smile.

I love the way Rhythm says “oh yeah” for “yes,” and sometimes runs several of them together when he’s excited: “ohyeahohyeah!” — with wide eyes and eyebrows up, like he just got a pleasant surprise. I love the way he nods “yes,” too, pulling his chin up with an inhalation, then bringing it down to his chest sharply, decisively, as he breathes out, as if he’s just made a very important decision. He loves to laugh, but can also be charmingly sincere and almost majestic at times, like a little prince addressing his subjects. I love the way he solemnly offers to share his food with me, holding a bite out to me earnestly and waiting for me to either accept it or say “no thank you.” I love his ways of showing affection, like taking my arm and placing it around his shoulders as we sit together on the porch swing.

He’s a real joy to be around. I hope that he will always have people in his life who appreciate him as much as I do. Fortunately, this seems to be the case. His family adores him, and at every party they’ve thrown, I’ve seen how much their friends are fond of him as well. The other kids welcome him even when they don’t understand him, and he’ll wander in and out of their activities without anyone remarking on the strangeness of his behavior.  I wish every autistic child could be so lucky. And I count myself lucky to know him.

In Which I Am Profoundly Grateful

I want to take a moment here to talk about how much I love my current job. Often, people often see me doing childcare and ask me how many children I have at home, or how many I plan to have, and it gives me a moment of wistfulness.

The truth is, I don’t plan to have children of my own, ever. For all my skill with them, my health would not permit me to care for one 24/7. I only agree to watch children overnight in absolute emergencies, given how badly my body responds to having its sleep schedule disrupted (by which I mean I’m liable to be physically ill for days, if not weeks, afterward.)

Before you think to pity me too much, I’ve never really wanted to be a parent. I like having a lot of time to myself and keeping my schedule flexible. The idea of pregnancy has simply never appealed to me at all– in fact, it sounds very unpleasant. I worry about the strong genetic component to my own health issues (as a general rule, I don’t believe that disabilities are a negative thing to live with, but I’m willing to consider mental illness and chronic pain as exceptions). And I’m pretty well convinced that the last thing this planet needs right now is more human beings. I have occasionally considered adopting or fostering children, but unless my circumstances (especially my health) change dramatically, it’s an idle thought at best.

So: no munchkins for me. Which means I hugely appreciate the opportunity to spend time with children who aren’t mine. There is something ineffably wonderful about having the affection and trust of a child. I am so lucky that, at this point in my life, I’m in a position where I can afford to work in childcare for a year or so while I prepare for graduate school (and believe me, babysitting doesn’t come close to paying my bills). Even when I am exhausted, annoyed, or grossed out, I cherish getting to care for these young treasures.

Here are things that warm my heart:

… Today I got to soothe my baby-cravings with a cheerful, chubby, charming 9-month-old girl (I call her Plumpkin), who cooed and gurgled at me, tried to chew my fingers with her one-and-a-half little teeth, spat up all over both of us, and utterly melted my heart discovering the joys of playing with a paper bag….

… The other toddler, who will wake from his nap scrunchy-faced and wild-haired, and put up his little arms to me, clinging to me when I lift him, still smelling of sleep and babyness… or when he’s scared in a new situation, he turns wide eyes to me, fists bunched up in my shirt, waiting for me to reassure him that he’s safe…

… I haven’t seen 4-year-old Fishy in a few months, and I miss the way he leans his head against my chest while I read him stories, and the way he shrieks with joy when I spin around with him in my arms…

… I think of 7-year-old Rhythm, tugging at me to boost him up so he can see better, or clutching my hand as he walks along a narrow ledge, trusting that I won’t let him fall. His family recently threw a party, and one of the guests, a girl of perhaps 9, said to me as she watched us, “wow, he REALLY likes you.” I answered “well, we have a lot of fun together,” but I was honestly floored by her observation. I knew Rhythm had gotten comfortable with me, but I didn’t realize I had gone from barely-tolerated-babysitter to someone he liked so much that a friend of his would comment on it…

… And I remember Tangles, a beautiful 10-year-old with so few communication skills, staring at me intently as we sat together on the couch, then leaning over suddenly to press her lips to my cheek, to my flattered amazement…

I am so, so lucky to have these wonderful children in my life. When I tell people that I work with disabled children, often their first instinct is a sort of mixture of pity and being impressed. “Isn’t that so HARD?” they say. And I’m torn between laughter at how wrong they are and sadness at their misunderstanding.

“No,” I tell them, “it isn’t hard at all. The children I work with are incredible, every one of them. I wouldn’t trade them for anything in the world.”

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.