Tag Archives: respect

A Researcher Asks…

I speak with a researcher who says, “we need to hear the pain and needs of the parents of individuals affected by the disorder.”  She goes on to say, “Nobody else can know better what the needs of the affected person are.”  “Oh,” I say, “how about speaking with Autistic people?”  Surely they know better than any what it’s like to have once been a child.  The researcher tells me this is not their focus.  I try to understand what I’m missing, what is the focus then?  I ask more questions.  I listen.  As I listen I am aware of my heart.  It feels louder, is that possible I find myself wondering.  Can one’s heart actually beat harder?  I decide this cannot be true.  I’m upset.  I know I become more aware of my heart when I’m upset.  I try to listen to her words, but I’m not able to hear all of them.  I know I’m missing some of what she’s saying.  I concentrate harder.  My throat constricts.  My stomach tightens, my face feels warm.

I try to make a few helpful suggestions based on what I hear her saying.  But she is not interested in suggestions.  I try again.  It is as though we are speaking two different languages.  I cannot understand hers and she seems unable to understand mine.  We are becoming exasperated with one another. I try to provide answers from my perspective, but this is not the focus of her research she tells me.  The needs of Autistic people are not the focus.  I feel some confusion.  How is this research?  How can one do research if the questions are already skewed?  Isn’t research supposed to be unbiased?  Isn’t the point of research to learn more, to understand?  But we are trying to understand, she tells me.

We are circling each other with growing wariness.  The conversation began one way and somewhere it took a turn.  I’m trying to both back track to see where it changed from cordial, curious and open, to distrust, while also still listening and trying to understand what this research is meant for.  My daughter is behind me.  She drifts past where I’m sitting and stops.   She is looking up toward the ceiling, her head slightly cocked to one side.  I know she hears this conversation.  I know she can feel my growing tension.  “I’m just going to take this call into the other room,” I whisper to her.  I go into the other room and shut the door.  I don’t want my daughter exposed to more of this.

The constant barrage of words – Disorder.  Pain.  Afflicted.  These are the words the researcher uses.  These are the words, like a never-ending eddy threatening to pull my daughter down.  I once used these words too.  I once said things to others in front of her.  “You walk forward and not backward,” Emma wrote the other day.  Just before that she’d written, “…regrets are not needed.”  I owe this to her.  I must move forward and not backward.  Regret, like those words, pull me down.  I have made a commitment to become more aware of my regrets and to not allow them to keep me stuck.

I become aware of the researchers voice again.  She really wants to know, she says, about the pain.  And I lose my patience.  I tell her no one would dream of asking me this question regarding my non autistic child.  I tell her that if she is interested in understanding Autistic children, she should ask Autistic adults to describe what it was like.  She says, “Well, if you’d like us to speak to your daughter we can certainly do that too.”  But that isn’t what I suggested.

My exasperation with her has now crossed over into anger.  She compares autism to Parkinsons and I’m furious.  “Let’s not do this,” I say.  We are practically competing with each other as to who can hang up faster.  I am madly hitting the red button on my phone to hang up, but it won’t disconnect.  This would be comical if I weren’t so upset.  I have a moment when I see the humor, but it’s fleeting.  I remind myself to come back to this feeling.  Finally I stand there looking at my phone and I feel utterly defeated.  This was an opportunity to offer another point of view and I failed.  Miserably.  I go out into the other room, where Emma is listening to music and dancing.  I watch her, marveling at her beauty, her grace, her joy.  In contrast, I’m a churning mess of anger, indignation, sadness and upset.

“We are interested in the needs of the parents,” the researcher said.  More accurate information, unbiased research, questions that are not skewed to get a particular response, training that would have helped us support my daughter to communicate through typing at an early age, removing the emphasis on spoken language, abandoning functioning labels, showing me that my neurology has deficits too, that we have devised a society skewed to accommodate non autistics who use spoken language to communicate and how that benefits those of us who speak and aren’t Autistic, but hurts those who are, helping me understand that we have set up our schools to segregate a population that should be included and not excluded.  My needs?  Change the way autism is viewed and spoken of and my needs will dramatically decrease.  Help me navigate parenting an Autistic child by giving me access to Autistic people and culture.  Show me others who are parenting with love, compassion and complete and utter respect for their child.  Most of these are things I’ve found for myself, but what a wonderful difference this would have made earlier.

Research

 

Presuming Competence – Revised

Over the past few years I’ve written about presuming competence as I have come to understand it, ‘here,’ ‘here,’ ‘here,’ and ‘here‘.  Over the years my definition continues to shift or, perhaps more accurately I should say, my ability to practice presuming competence continues to shift.  I still grapple with whether I am going far enough when I  presume competence, though the simplest definition, is also the best one, which is that we presume all human beings are capable of learning if given the right supports and accommodations.  But many want to know what that means for a specific person they know or are working with.  What are those supports and accommodations?

There are a couple of universal things I have found extremely helpful.  (I’m hoping others will add what they’ve found universally helpful as well as specifics that may be particular to just one or two.)  The first is being respectful of the person and speaking to them as one would speak to any human being regardless of whether they use spoken language or not.  It may take some getting used to, because unlike someone who uses spoken language easily, you may not get a spoken reply, or you may get a spoken response that you cannot make sense of.  Either way, I have found, speaking to my daughter (and I’m now talking about before we knew all that she knows and before she was typing with us) as I would any person her age, was critical.  Explaining to her what was going on, what was going to happen next, what we would do if something we expected to happen didn’t, and including her in any and all conversations that were taking place in her presence, has been key.

In situations where a meeting is occurring, as might happen during an IEP meeting at school or with a team of therapists or with a doctor and nurse, I have found the single best thing I can do is include her in the conversation.  (I have made many mistakes over the years, so please do not interpret this as my suggesting I do all of this perfectly without ever stumbling along the way.)  So, for example, when we arrive at the place we are having the meeting, I will speak to her as I would anyone her age.  I will ask if she’s comfortable in a particular chair or if she’d prefer sitting in a different one, perhaps away from direct light, or one that might have a cushion.  Today I always sit to her right so that I can hold her keyboard for her as she types.  I make sure she knows why we are all gathered.

If others begin to speak about her (as they almost always do and will) I will then politely remind them that she is right here and has no issues with her hearing.  Emma wrote during one such meeting, “My hearing is excellent.”  These days I hold the keyboard for her to write questions she may have or to add whatever she might like.  As Emma now types with us daily and is more used to this, she will often initiate a question or comment without me asking her if she wants to add something.   But in the past, if the people at the meeting continued to speak about her as though she weren’t present or seemed completely confused by my insistence on including her, (which many undoubtedly will)  I might then say something about how hurtful and disrespectful it is to be spoken of in this way and that I’d appreciate it if they would rephrase their language.

If the talk becomes an endless list of deficits I would ask them to identify her many talents and assets and point out that constant criticism is unhelpful and destroys self-confidence and self-esteem.  If they are silent (as has happened to us in the past) and seem incapable of naming any assets, I would give them a few opportunities to learn and do better, but at a certain point, professionals should be held accountable for what they are doing and how they are behaving.  If after several opportunities, they continue to disregard my daughter and seem incapable of treating her with respect and seem convinced that she cannot understand, they do not deserve to be paid for their “services”.

Another helpful tool is a yes/no laminated card.  I used to carry one or several around with me and would ask Emma to verify any yes or no question, because she often says “yes,” but means “no”.  I found that what she pointed to with the laminated card, was almost always correct, while the spoken answer wasn’t as much.  I have since seen iPhone and iPad apps that people use, which are almost exactly the same as the laminated card I once used.  A friend of mine holds up her index fingers from each hand and says, “yes” and gestures with the one index finger, or “no” and then gestures with the other index finger.  I remember being shocked that this simple method could produce accurate answers and yet it did.  Obviously if there are profound physical issues, this may not be possible, so the laminated card might work better as one can position it so that a large range of physical movement will not be required.

Yes/No

Yes/No

 

Respectful Engagement

Respect.  I think about this word a great deal.  There are things I do, things I think in any given moment are examples of me teaching respect and yet in the teaching I am not modeling the respect I am trying to teach.  Here’s an example of what I mean –  (this example is fairly mundane, but it serves my purpose because it’s something that most of us can relate to.)

Let’s say Emma and I are in a new place.   Somewhere, perhaps like the place we recently went to give a talk on Autism Acceptance, where most or all of the people are strangers.  As we enter the room I notice someone I do know and they walk over to say hello.  My upbringing dictates that I introduce this person to my husband and daughter.  I do this by saying, “Hello _______, this is my husband, Richard, and my daughter, Emma.”  The person nods and says hello, maybe they even extend their hand.  My husband without thinking, says something along the lines of “Hello _______, it’s nice to meet you.”  Maybe they shake hands.  My daughter turns away saying nothing.  I am aware that this is not the conventional way (polite) to greet someone so I, without thinking, direct her, “Emma say hello to _________.”

I know enough not to ask her to touch the other person, even if they’ve extended their hand, but I forget that there may be a good reason for her non-greeting.  Perhaps the lights are too bright, or all these strangers are too much, perhaps she is overwhelmed, or the noise is making it difficult for her to concentrate on any one thing.  Perhaps she senses this person is not someone she gets a good vibe from, perhaps the person is standing too close to her.   Regardless of whether I know what could be causing her not to say hello, demanding that she do so, is not the best thing for me to do.

Instead, I might lean down and whisper in her ear, “Do you want to try saying hello to _____?”  If she does decide she’d like to and can, fine and if she cannot, for whatever reason, then that’s fine too.  But before I say something like this I will want to have done a lesson plan around “social niceties” or the things people say to each other and why they do so.  This is the ideal.  However this is not what I always do, because I forget, but these are the little things I constantly think about.  How can I parent better?  How could I have approached that situation more respectfully?  How can I use this as a teaching moment, not just for my daughter, but for myself?

One of the things I’ve learned over the years is that kindness, directed toward myself and others is the single best way most of us learn.  When someone yells at me, I don’t learn, in fact, I shut down.  Even if the person does not yell, but criticizes me, scolds me, directs me to do something without explanation, I feel myself becoming self-conscious or worse, shutting down.  I close in on myself.  I can’t hear what the other person is saying.  I become engaged in an internal battle.  When someone is respectful and kind, I am open and much more likely to listen to them.

People say things like – “oh but that takes such patience,” or “who has the time to do all that?”  I understand.  But I know that the other way, while easy and perhaps quick, is nothing more than a quick fix, if that.  The person may say the words I’ve just directed them to say, but the next time I will go through the same process.  But there’s an even more important piece to all of this, because one can argue, who cares about social convention?  Why should any of us care?  Why should we say hello to one another?  None of this matters.  And I agree, none of this is really the point, the bigger point is that I want my children to understand that we live in a world filled with other people who may or may not share their neurology and that many of those people when met for the first time may offer their hand, if in the United States, and say hello.  I want my children to not be put off by this, but know that they have the option to say hello if they are able to, or not and that I will be respectful of them no matter what their response is.

Directing my daughter to say words that I give her, is not being respectful of her and it also is not presuming competence.  When I give her words to say, I am allowing my issues around social convention to take precedence over respect for my daughter and her sensitivities to her environment.  I want to do better than that.

*I purposely have used the present tense, as this is something I continue to explore and am trying to do things differently.  This is very much a work in progress!

Dressed for spring rain - April 8th, 2014

Dressed for spring rain – April 8th, 2014

Parenting = Love, Respect & Encouragement

One of Emma’s top five favorite IMAX movies is, Born to Be Wild about orphaned orangutans and elephants and the people who rescue and nurture them until they can go out on their own to live independently in the wild.  It’s a beautiful film and during the watching of it, Emma did a running narrative, which was both amazing and insightful because the things she noticed and talked about were not necessarily the things I noticed.  Her observations were all about identifying with the baby orphaned animals and not about the humans who have saved their lives.  This is as it should be, it seems to me.

She was identifying with the small animals, whose lives are dependent upon the human adults to care for them, respect them, nurture them while they are still so vulnerable and young.  I, however, identified with the adults who are feeding, caring for, giving bottles to, making comfortable sleeping areas for, while being careful to not “tame”, so they will one day be able to return to the wild.  I was so relieved to see the human caretakers encouraging the babies to build their innate skills by taking them to places where they could strengthen and build their climbing abilities and offering them materials to make nests or giving them the opportunity to interact with older orphans who would soon be venturing out on their own.

It was impossible for me, as a parent, to view this movie and not see the connections to parenting.  How we try hard to manage that balancing act of encouraging our children to do for themselves, only intervening when absolutely necessary, trying hard to not over identify, to honor and respect our children and not think of them as reflections of ourselves.  Watch for their innate talents and foster and encourage them, join them in their interests instead of trying to foist our interests upon them.  Respect them enough to allow them to make mistakes, encourage them to dare to dream big,  and give them the opportunity to flourish without criticism, but with love and guidance.  In the end, we all want that from each other.  We all want to feel loved and to love.  We all want to be seen and heard.  We all want to feel we are approved of.  We need that.  Children, adults, living beings, we all want to feel we matter.

Unknown

Respect

I don’t know about you, but there are definitely days when I lose sight of long-term goals.  I become impatient.  I forget to respect the process… whether it’s my own, my husband’s, a friend’s or either of my children’s.  I just don’t.  I want things to happen on MY time frame.  I like when things happen in exactly the way I imagined they would, with the speed in which I hoped for.  I LOVE when things happen even faster or in a way I couldn’t have imagined and end up even better than I thought.  But when things meander along, taking their time, going at a pace far too slow for my liking I have trouble…  My father used to say to me, “You want what you want, when you want it.”  This was NOT meant as a compliment.   He was right.  I am impatient.  I prefer when things I want to happen, happened yesterday.

I used to think I would become more patient with age, but if anything, growing older makes me even less patient as I’m more aware of my mortality and that there really is an “end” to all of this, or I should say an end to me(gasp!) and therefore I have to hurry if I’m going to get everything I want done, finished.  You know, things like changing the way people perceive autism, changing the way society treats people with disabilities, changing how our education system works… little stuff like that…  *Big grin.

So when I’m hit with a wave of impatience, when I am most definitely NOT respecting the process, whatever and whomever that may apply to, I must remind myself of my tendency toward impatience and that I do not control much of what happens in this world.  Everyone can let out their breath now; I know that was something most of you were concerned about.  *Said with a big smile and a generous dollop of sarcasm.

Respect… this is something I think about a great deal.  My daughter’s life is no less worthy of respect than my own.  Respecting her means, listening to her, finding out how best to communicate with her, I have to respect the way she learns, the best ways for her to express herself in any given situation, the way she takes in information, the time she needs to move from one thing to the next, the clear instructions she needs so she can do what is being asked and honoring her as a human being who deserves to be treated with dignity.

Respect.

Musings of an Aspie wrote a post the other day entitled, (Not) a Little Slow.  It’s a terrific post, one I wish was part of a “Welcome To The Tribe – Things You Should Know Handout”.  I wish this handout existed for all of us when we receive an autism diagnosis, whether for ourselves or our children.  Actually this imaginary handout should be made available to every human being on this planet.  If we treated all humans with the kind of generosity, respect and civility practiced at Autism conferences where Autistic people are not only in attendance, but are largely responsible for the creation of the programming and planning, this world would be a better place.

Respect.

Em & Laura on the subway

Em & Laura