Things that need saying

November 21, 2011 Leave a comment

This blog is where I write primarily about disability rights from my own experiences as a person with disabilities and (more recently) disability rights activist. I also have a BS in psychology, with a concentration in cognitive and neuro psych.

Since graduation, I have worked as a psychology research assistant and as a caretaker for children with assorted developmental disabilities.

I am currently in the process of further editing this blog to ensure the privacy of everyone I mention in it. I am saddened to have to omit and change some details, as I greatly enjoy accurate descriptions, but with this blog slowly gaining more attention, I want to be certain that I do not violate the trust that families and friends have shown me in sharing their stories and letting me spend time with their wonderful children.

A Call to Action

No one wants to admit this. There is a crisis in this country and across the world. An epidemic, if you will. There is a terrifying large percentage of people with a certain disorder of brain function that involves major deficits in many key areas– including sensory perception, attention, reasoning, communication skills, the ability to prioritize appropriately, and expressive empathy (the ability to respond appropriately to the emotions of others). No one knows for sure what causes this disorder, but both genetics and environmental factors seem to contribute strongly.

These people need our help. Without intensive intervention, most of them will never recover, although some do improve greatly over time on their own. Unfortunately, very few of them are aware that they need help, and even fewer accept that help when it is offered. Teaching them is a long, laborious, intensive process requiring massive amounts of repetition. They just don’t listen. Even when we carefully tailor lessons to their learning style, they learn so slowly, and are so resistant, that it is easy for us to want to give up on them altogether.

We must not give up. These people require billions of dollars worth of services every year. They waste much of their time on worthless obsessions and activities that are useless at best and outright harmful to themselves or others at worst. And while most of them are non-violent, far too many cause serious stress and even pose a physical danger to their families. Many of them become aggressive when asked to change even minor habits and beliefs.

Despite the vast amount of scientific literature on this population, we’ve made very little headway in terms of developing effective strategies to change their problematic behaviors. I should acknowledge that not all people with this disorder demonstrate those behaviors. Some are very high functioning– we tend to see them as quirky rather than burdensome. Others, however, are a serious challenge.

Something needs to change here. As hard as it is for us, as frustrating and heart-breaking as it is to reach out, day after day, to people who seem to have little hope of responding, we cannot simply give up. We need to put serious money towards research, towards training educators and therapists. We have to find a way to help these people become functional members of society, who contribute to the greater good and are no threat to themselves or others.

This tragedy must be halted in its tracks. Help fight the ravages of neurotypicality. The well-being of our children, our nation, even our planet, depends on it.

Crossing the line: The Danger of Compliance

Restless Hands:

I… wow. Just wow. This is important.

Originally posted on Thirty Days of Autism:

As Amy Sequenzia so eloquently states: “ABA is not only abusive to Autistic children, it makes ableism and abuse acceptable. “Experts” want 40 hours/week of this and parents who don’t comply can lose their children. ABA creates a culture of normalized abuse.”

~

The following is a guest post composed of a series of writings by Bernice Olivas, who has generously agreed to share her experience. Hers is a harrowing story, but one that illustrates the dangers of demanding compliance on so many levels – and it is a story that needs to be understood.

It’s been two years since Nebraska’s Child Protection Services threatened to take away her children because she refused to place them in full-time (40 hrs/week) compliance-based training.

She and her husband were never accused of abuse or neglect, the only reason CPS was involved with her family was because her children are autistic and some…

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Restless Hands: Acceptance, Love, and Self-care: #AutismPositivity2015

May 15, 2015 1 comment

Scattered memories:

…He meets me at the door, eyes wide. Takes my hand, looks into my face intently, bounces up and down in place. I give him my biggest smile and squeeze his hand. “I’m happy to see you, too” I tell him. Later, I read to him, ASAN’s “Welcome To The Autistic Community (Adolescent).” He doesn’t usually want me to read to him for very long, but this time he doesn’t interrupt me at all…

His flapping hands and bouncing feet are so beautiful to me.

…Another day, another child. I spend the afternoon pushing him on a rope swing in the backyard– around and around he goes, shrieking with happy laughter. Then he gets down, gestures emphatically. “You want me to get on the swing?” Nods. I try to refuse– I’m too big, too old. He is firm. He wants to share, to give me a turn me to experience what he did. I get on the swing and he pushes me, intent on his task. I smile, I laugh, I get dizzy. He laughs with me. I thank him for his insistence that I try….

His solemn demeanor and meticulous nonverbal instructions are so beautiful to me.

…Yet another day, another child. “You want to leave already? I don’t know what’s wrong!” says a mother as her son tugs her towards the door of the arcade room, “I thought he liked it here!” I am surprised– she doesn’t see what I see. “He does like it here,” I explain “But he’s feeling a little overwhelmed and needs to be somewhere quiet for a few minutes.” I lead him to an unused room. He lies on the floor, cool linoleum under his hands, gazing out the window through dark lashes. I sit beside him quietly until I see the tension leave his body. I stand, offer him a hand. “You ready to go back in?” After a moment, he takes my hand, gets up, and we walk back into the arcade together…

His hummed tunes and verbal sound effects are so beautiful to me.

…And yet another. It’s her birthday and I sit next to her on a large trampoline while small children clamber all over me. She bites a stuffed animal happily on the nose. The younger girls do tricks, reminding each other to be careful around her– she’s bigger than they are, and much clumsier, prone to unexpected movements. Indoors, I catch her hand heading for a bowl of dip. I help her sit, feed her bites of chips and dip. She grabs for a strawberry daiquiri that one of the parents is drinking. I laugh and ask her mom to fix her up a non-alcoholic version. Gluten-free brownies stand in for chocolate cake. We all sing happy birthday and she claps her hands…

Her happy shrieks and shaky hands are so beautiful to me.

Every one of these kids is nonverbal and considered “seriously” disabled. I consider myself profoundly lucky to have them in my life. And I will speak up for them, for their needs and rights and desires… because, while I am not and have never been “seriously” disabled, I know what it’s like to /need/ a few minutes away from the sound of other humans… To make a sound over and over just for the fun of it… To express excitement with my body instead of my voice… To have to fight my own body sometimes…

We all have the right to learn in a way that makes sense to us, to live in an environment that doesn’t hurt us, to be part of a society that accepts the things we need in order to be safe and healthy and happy and whole. We deserve to be ourselves, our whole selves, and to be accepted for it even when we are not understood. We deserve to be loved for our quirks, not in spite of them. There will always be problematic systems and problematic people in our lives. But my greatest wish for every autistic person is that at least one person close to you, in your life, appreciates how wonderful you are, exactly the way you are.

Because flapping hands are beautiful. And nonverbal communication is beautiful. And sensory obsessions are beautiful. And trying your best is beautiful. And enjoying yourself in ways others don’t understand is beautiful. And sharing those experiences with others is beautiful. Quirks and tics and routines are beautiful. And so are all of you.

*** read more posts at https://autismpositivity.wordpress.com

A Day at the Beach in Autism-Land

April 10, 2015 1 comment

Once upon a time, I realize sadly, I would have thought there was something “wrong” with a child like this one. I would have been ill at ease around him when I was a child myself. Painfully timid in my own childhood, I had almost a phobia of anything that stood out from the normal and drew attention to itself, completely unaware that I was one such subject myself. I didn’t “speak” fluent neurotypical then, but neither did I speak autistic, at least not in the sense of being able to relate to most other autistic people (though I suspect one of my few childhood friends would have qualified for a diagnosis of what was then called Asperger’s syndrome).

Now I speak passable neurotypical, and quite diplomatically at that. I also speak passable autistic– perhaps not with perfect fluency, but enough to make friends among its native people. Neither language requires much conscious effort on my part, except in extreme situations. “Speaking” is a metaphor here– it’s much less about verbal language than about mental and behavioral language. Perhaps I bridge the gap so well because my brain’s native language is verbal– like that of most neurotypicals– but its syntax and vocabulary are closer to autistic.

Language is on my mind because I think my young companion at the beach today speaks a very different neurological language than I do. His mind, I suspect, does not yet think in words. He seems to understand words that others say, although I have yet to gain a sense of his level of language comprehension. He shows no interest in words, so far as I can tell. I should mention that today was only my third time working with him, but within a few hours of our first meeting (when I introduced myself by reassuring him that I wasn’t there to make him sit at a table and do things), he identified me as an acceptable adult to trust and ask for help with things.

A neurotypical observer of us at the beach today would probably have identified little interaction, much less cooperation, between us. The same observer might not have known we were playing and having fun, except by looking at our smiling faces. They would have seen, mostly, a young woman meandering along the beach with an elementary-school boy, about 1-3 meters (yards) from him at all times.

The boy jumps on the wet sand at the water’s edge, squats down to gather a handful, tosses it to himself for a few minutes, repeats. He stands, lopes a few feet down the beach. Bends backward to stare at the sky. Stands with his head and leg angled to one side, like a dancer caught mid-turn, looking down at his own heel. A phrase from a piece of autistic performance art comes to mind– “stiff and stimmy, stiff and stimmy.” One hand flaps rhythmically, sometimes hanging down loosely from the elbow, at other times up near his face, his elbow bent. (I wince, recalling that as children we used that gesture as a derogative  to indicate intellectual disability). He dashes into the surf and back, jumps, twirls, crouches, kneels, kicks water, scoops sand, again and again and again. Sometimes he brings sand to his face, smells or tastes it carefully. He is smiling broadly almost the entire time.

The boy is never silent. He shrieks, growls, makes sound effects, gives bird calls, vocalizes vowels, and hums– sometimes a few notes, sometimes a recognizable line or two from a song. I repeat a hummed phrase with him maybe 10 times, obviously knowing it yet unable to place it, until I finally recognize it as a middle line from a Christmas carol. Over perhaps an hour, I recognize half a dozen songs– children’s songs, mostly, in both English and French– all hummed perfectly in tune. He does not say or sing any words.

I walk along the beach near him, not crowding. I stoop to pick up shells, rocks, or seaweed. I draw patterns in the sand with my hands and feet, dig holes, make piles and shapes of sand that the boy often comes over and takes from my hands to play with. Sometimes I hum what he is humming, or join him in a yell of excitement or joy. Sometimes I hum or sing something else. Often I am quiet. I, too, am usually smiling.

Here’s what a casual observer does not see: every ten minutes or so, the boy looks up at me, as if making sure I’m still nearby, and smiles when his eyes meet mine. Although he walks looking at his feet, he manages not to bump into anyone on the busy beach. Only once or twice does the water and sand he is flinging about come near to hitting anyone. On those occasions, I come over, tap his arm, and remind him to please be careful not to get sand on other people. When he wades deeper into the waves, with me walking alongside him, he comes over to hold my hand, not letting go again until we’re back in the shallows. He doesn’t try to go in the water any deeper than where he can stand firmly, a level of safety-awareness that even many neurotypical children lack. His mother comes over at one point and asks if he is ready to leave. He gently but firmly pushes her away. At one point he takes my hand and pulls it toward his jacket. “You want me to take your jacket off?” I ask, and take hold of a sleeve. He pulls away, then brings my hand to his jacket again. “You want me to zip your jacket up?” I guess, and he stands still while I do so.

Here’s what I almost miss: a number of minutes after I pick up an interesting rock, he picks up a rock. He tosses it to himself for a while, then hands it to me to hold. Usually, as I draw patterns in the sand, he ignores them. Sometimes he comes over and steps on them. I wonder if perhaps he wants me to stop, but then I realize he’s just trying to experience them in a tactile way. Much later, he begins using his own feet to make patterns in the sand. I assume this is something he’s always done until his mother expresses surprise. I realize he’s been paying close attention to me all along.

From time to time, I tap his arm a few times to get his attention and point out something– a kite, a pelican, a crab– or make a request (“let me take your shirt off before you get in the water,” “We’ve gone far enough– let’s head back towards your Mom now,”).

I learn about the texture and feel of the sand in great detail. The warm, fine sand that lies dry above the tidemark. Sand swirling in the water against my legs. Watery sand between my toes as the waves retract. The innumerable textures and behaviors of sand between wet and dry– it’s fascinating stuff, really, the physics of how it moves and dries, clumps and scatters and melts. I stomp, place my foot lightly, press down, try to make different depths of footprints. The sand here is wonderful– white and black grains of slightly different weights that settle into beautiful patterns, and golden flecks of mica throughout both.

It’s a perfect afternoon, spent with a perfect companion. I wonder many things, about what he knows and doesn’t, when he will acquire certain skills that most children his age perfected long ago, when he will begin to communicate in words. I wonder what occupies his thoughts, remembering my own childhood hours of telling myself stories as I wandered back and forth in the yard. I wonder what it’s like to think in something other than words. I wonder what kinds of things he should be taught now, and how best to convey them, and how I would know whether or not he understands. But I have no fear– either of him or for him. He is obviously intelligent, happy, alert, and generally cooperative and considerate when he is aware of what others want from him. I can’t understand how anyone could think there is anything “wrong” with a child like this.

Unlocked: The Lois Curtis Story

Restless Hands:

A good essay about an important event in the history of Disability Rights

Originally posted on Dixie's Land: Robin Rayne Nelson's Photojournal:

A determined Georgia woman and her lawyer changed the landscape for thousands of institutionalized persons with developmental disabilities who yearn to live in their communities.

©Robin Nelson All rights reserved

Decatur, GA — Lois Curtis blew the chalk dust from her finished portrait and handed it to her young visitor. “That’s you!” beamed the 43 year-old self-taught artist. “I like to do pictures,” she exclaimed. Lois began sketching another face, of no one in particular, while humming a favorite tune to herself.

She might sketch a dozen pictures in an afternoon, or be content to write letters to friends, acquaintances, anyone for whom she might have an address. “Give me your address so I can write to you,” she said to her visitor as she reached for her ever-present cigarettes. “I like to write letters, too.”

Lois fills her days at the Peer Center in Decatur, a peer-run alternative…

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Celebrating Autistic Culture, Autistic People & Autistic Pride in April!

Originally posted on Parenting Autistic Children With Love & Acceptance:

Are you planning an Autism Acceptance Event this April?   Something that challenges traditional “awareness” by centering the voices and experiences of Autistic people?

PACLA wants to know about your event!  We want to put together a resource for others to be able to participate and contribute to events in their neighborhood or city, or online where anyone can participate!

To have your event listed on our blog, Facebook page and Twitter,  please send an e-mail with the details to:  lei.mydske@gmail.com

We’ve had enough “awareness”, let’s celebrate Autistic people this April with positive messages that embrace acceptance, inclusion and neurodiversity!

paclaeventsignalboost

Image: Red text in upper left corner reads:  Are you planning an Autism Acceptance Month Event?  PACLA wants to hear about it!  Red text in lower right corner reads: “We want to signal boost your Autism Acceptance Event onour blog!  Live events or  online events!  Any event that celebrates Autsitic culture, pride…

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Dangerous Assumptions

January 2, 2015 2 comments

Restless Hands:

I work with kids of all ability levels. To me, they are all brilliant in some way, and I celebrate their every accomplishment.

There are the ones I know will go far, assuming no one breaks them too badly– the ones who show that “genius” streak already, in spite of language delays or motor skill difficulties.

There are the ones whose intelligence and potential I cannot judge at all.

And there are, at times, those I think will always need major support.

And I adore them all. I respect them all. They all deserve to be acknowledged as individuals and treated as real people. They deserve friends, fun, loving families. They deserve to have their preferences noted and their personalities appreciated. They deserve to be talked to, listened to (even if they can’t use words), read bedtime stories. They deserve to be dressed in nice clothing and taken out for treats. They deserve a turn at activities. They deserve the chance to try to do things themselves– over and over and over. They also deserve to have someone do things for them or assist them when needed.

Originally posted on Just Stimming...:

There is this thing that happens sometimes.

Parent has an autistic child. Autistic child doesn’t speak, or their speech isn’t an accurate window into what they are thinking. Autistic child is presumed to be very significantly intellectually disabled.

Years later, a method of communication is found that works for the child, and it turns out that they are in fact very smart. Very smart! The parents are overjoyed. They begin talking about presuming competence, the least dangerous assumption, that not being able to speak is not the same as not having anything to say.

They are so, so excited.

And they start talking about all the incorrect assumptions they had. If we’d known, they say, we wouldn’t have done X. If we had known they could read, think, hear us.

And it’s a big problem, because the way they talk…..they think the problem was that they treated their child like…

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