Autism acceptance is one of those catch phrases that takes on a meaning of its own, but if you ignore anything that has been added in meaning to the phrase, of course I am in favor of autism acceptance. The opposite of acceptance is rejection, and I can't reject autism without in essence rejecting people with autism, because autism doesn't exist outside of the people WITH autism. So yes, I certainly believe in autism acceptance.
It gets a little more complicated than that, of course. As it often seems to come back to lately, there's a big gap here between low and high functioning autism. Janey isn't going to much affected by job discrimination---I very much doubt she'll ever hold a job. She isn't going to ever most likely be out in public without someone taking care of her. She hasn't yet learned to use a communication device consistently or talk with much meaning, so despite how much we do listen to what she says, often she can't speak for herself. I accept all these things about Janey, but I do want to work on making her life easier by changing or adjusting some of them. How does that work into it? Am I not being accepting of her when I try to get her to say what is bothering her instead of crying? Is trying hard to toilet train her not accepting her? When I insist she keep herself clothed, is that unaccepting?
And what about going beyond acceptance? What if I sometimes DELIGHT in Janey's autism, not just accept it? Strangely, it feels almost wrong to think of delighting in something Janey does because of her autism. And that is odd, because is it okay to ACCEPT her but not to delight in her?
Here's a few examples from last night. Tony got home from work and Janey was thrilled to see him, as she almost always is. She was so thrilled she wanted to hang off him for half an hour, hugging him, asking him to pick her up, wanting to hold hands with him and so on. She was being very sweet, and Tony and I noted to each other that most 10 year olds are beyond being that excited to see their parents, and how sometimes it's a great contrast to how the boys react to us coming home. Later, Tony needed to drive me to an event at Freddy's school. We told Janey she was going to go for a ride in the car, and from the look on her face, you would have thought we'd said we were giving her the world's greatest treat. She didn't ask, as the boys would have, if we were going to get something to eat, if she was going to get to get out of the car, when we would be back, why she had to go---none of that. She was just excited to be going for a ride with Mama and Daddy. On the way home, Tony told me she kept saying "Mississippi!" as if she'd just heard the word for the first time, laughing her head off at how it sounded every time.
Thinking about Janey last night, we realized we felt delight in how she was acting, delight in things she did that all had a connection to her autism. Typical 10 year olds would not probably do those things. They were more two year old type behaviors. But we loved them. Janey's good moods are a treasure, especially coming off a few tough weeks. And her behavior was made more delightful BY the autism, not DESPITE it.
My point here is that acceptance is a pretty lukewarm word. I certainly accept Janey, but my relationship with her autism is more complicated than that. Sometimes, I feel autism despair. Sometimes, I feel autism delight. Sometimes, I want to change the parts of autism that make life hard for Janey, but some parts I would be very sad to see go---some parts of her that relate to her autism are wonderful. Catch phrases don't really cut it when describing how I feel about autism.
Rarer in Girls...Life with my daughter Janey, who is 21 and severely autistic
Showing posts with label augmented communication. Show all posts
Showing posts with label augmented communication. Show all posts
Thursday, October 9, 2014
Monday, July 28, 2014
Autism Acceptance...Thinking It Through
I'm not much of a trend follower when it comes to autism. I don't generally sign onto any particular philosophy or treatment plan or diet or "cure". If I were forced to pick an approach to pledge allegiance to, however, it would most likely be autism acceptance. The meaning of that, as I see is, is accepting a person with autism as they are, valuing them for how they act and function rather than what they might be able to become if changed. This philosophy fits with how I raised Janey's siblings, for better or worse. With both boys, there came a point when I realized there wasn't really a thing I could do to change their basic make-up, and that in fact I would not want to. Realizing that logically led to doing some things differently. For example, my second son and I used to battle daily over homework. He would have a lot of it, but would put it off, refuse to work on it, get angry when I mentioned it---the fights were truly putting a wedge between us. I realized I didn't want that to be our relationship. So I let it go. I stopped having anything to do with his homework. I left that part of his life up to him. And he took responsibility, but even if the result had been him not ever doing a lick of homework again, that was something I had to accept. I wasn't willing to have his teen years consist of one big endless fight. The same general scenario played out many times in parenting both boys, and I learned that you can't change your kids. That doesn't mean you let them act any old way. I am pretty old school in insisting on politeness and respect, but that is insisting on a behavior, which to me seems different than insisting on a personality trait.
So how does this tie into Janey and autism? What can I do to show her that I accept and value her as she is? How does this work with a child who is not usefully verbal, who cries for long spells, who can't spell out to me what she is feeling?
An incident this weekend let me to a lot of thinking about acceptance. I was trying to work on typing with Janey. I've heard about other girls (and boys) who seem similar to her learning how to type, and being able to tell in amazing clarity what they are thinking. Janey has hated any attempt of mine to get her to try iPad communication programs, and I thought I'd take a new route. We sat together and I encouraged typing on the keyboard. Janey responded quickly---by going up to the top right of the screen and clicking on the little "x" to close the program. She's got some good computer skills. I opened it again and she closed it again. We went back and forth about 6 times, and finally she started to scream. This is very similar to the many times I tried various communication programs on the iPad with her. It's not that she doesn't like the iPad or the computer. She loves them both, and uses them with complete ease. But she hates to be directed. Left to her own devises, she'll try everything on the iPad, and explore YouTube for hours. But if I step in and try to have her work on what I want her to, she shuts down---literally shuts down the program and figuratively shuts down mentally.
So I gave up on the typing. I decided to tell her so, directly. I said "You don't seem to want to type with me. We won't do that for now. If you want to try it again another time, we can, but it's up to you" The look she gave me---I wish it was recorded. It was a wonderful look---a look of relief and amazement. And she started to sing. She sang three verses of "Hark the Herald Angels Sing", in her angelic voice.
I realized, on reflecting, that Janey does communicate pretty well. She doesn't communicate the way I am trying to get her to, but she was pretty plain in what she was saying. She closed the program, over and over and over. She cried when I kept trying to force her. And when I told her we would stop, she sang one of her favorite songs, a song that talks about glory and peace.
What if I choose to accept Janey--fully? What if I don't make that acceptance dependent in any way on her changing? What if I accept the crying spells? What if I accept her quirky interests? What if I believe her when she tells me what she wants and doesn't want to do, even if it's not in a direct way? What if I assume she does understand what she wants and what I want? I will still insist on politeness and respect, as far as she is able to provide those. She's not going to bite us, or fling things on the floor, or get her way if she wakes in the night wanting the TV on full blast. Accepting kids doesn't mean letting them do whatever they want. It has everything to do with respecting her while insisting she respect others. It has to do with listening to what she has to say, no matter how she chooses to say it. It has to do with letting her be who she is, because she is amazing, right now, right the way she is.
So how does this tie into Janey and autism? What can I do to show her that I accept and value her as she is? How does this work with a child who is not usefully verbal, who cries for long spells, who can't spell out to me what she is feeling?
An incident this weekend let me to a lot of thinking about acceptance. I was trying to work on typing with Janey. I've heard about other girls (and boys) who seem similar to her learning how to type, and being able to tell in amazing clarity what they are thinking. Janey has hated any attempt of mine to get her to try iPad communication programs, and I thought I'd take a new route. We sat together and I encouraged typing on the keyboard. Janey responded quickly---by going up to the top right of the screen and clicking on the little "x" to close the program. She's got some good computer skills. I opened it again and she closed it again. We went back and forth about 6 times, and finally she started to scream. This is very similar to the many times I tried various communication programs on the iPad with her. It's not that she doesn't like the iPad or the computer. She loves them both, and uses them with complete ease. But she hates to be directed. Left to her own devises, she'll try everything on the iPad, and explore YouTube for hours. But if I step in and try to have her work on what I want her to, she shuts down---literally shuts down the program and figuratively shuts down mentally.
So I gave up on the typing. I decided to tell her so, directly. I said "You don't seem to want to type with me. We won't do that for now. If you want to try it again another time, we can, but it's up to you" The look she gave me---I wish it was recorded. It was a wonderful look---a look of relief and amazement. And she started to sing. She sang three verses of "Hark the Herald Angels Sing", in her angelic voice.
I realized, on reflecting, that Janey does communicate pretty well. She doesn't communicate the way I am trying to get her to, but she was pretty plain in what she was saying. She closed the program, over and over and over. She cried when I kept trying to force her. And when I told her we would stop, she sang one of her favorite songs, a song that talks about glory and peace.
What if I choose to accept Janey--fully? What if I don't make that acceptance dependent in any way on her changing? What if I accept the crying spells? What if I accept her quirky interests? What if I believe her when she tells me what she wants and doesn't want to do, even if it's not in a direct way? What if I assume she does understand what she wants and what I want? I will still insist on politeness and respect, as far as she is able to provide those. She's not going to bite us, or fling things on the floor, or get her way if she wakes in the night wanting the TV on full blast. Accepting kids doesn't mean letting them do whatever they want. It has everything to do with respecting her while insisting she respect others. It has to do with listening to what she has to say, no matter how she chooses to say it. It has to do with letting her be who she is, because she is amazing, right now, right the way she is.
Friday, July 25, 2014
Puzzling Out Janey's Limited Speech
Of all the mysteries Janey presents, the most frustrating one to me is her speech. Why is it that she doesn't talk more, and that her talking basically never advances? Or, perhaps the more correct question---why is it that she talks at all, while other girls with autism I've heard of that seem more advanced in most ways than her DON'T talk? Either way, why is it so hard for her to communicate?
Last night, I spent some time while not being able to sleep thinking about the possible reasons for Janey's limited speech, and eliminating them one by one in my mind, trying to get to the core of it. Here are the reasons I ruled out, and why...
Inability to produce words verbally
That one is easy to rule out, because Janey can say anything verbally. I know this because she DOES talk constantly, using delayed echolalia. Janey can recite the full script of movies and TV shows she's seen years ago. She can say several Three Stooges skits line for line. She remembers lots of poems she's heard at school, to say nothing of the thousands of songs she can sing. She has no problem producing speech sounds, with the exception of "th", which she has a bit of trouble with, but she says it anyway, cutely.
Lack of vocabulary
It would certainly be possible that Janey could have a lack of vocabulary, because the words she says via echolalia could be meaningless to her---just recited words. But that doesn't seem to be the case. The most vivid way this is shown is when she's in a very rare cooperative mood and she will allow herself to be quizzed on single words, with iPad programs that show pictures so she can name the words. She knows amazing amounts of words---mostly nouns, but some verbs and adjectives. She can name obscure things like "pelican", "castle", "earmuffs", "peacock" and more. We have watched her do this in amazement several times. She KNOWS the words.
Lack of understanding of spoken language
This would be more of a contender until recently. But Janey has shown more and more how good her receptive language is. The best way she shows this is by following complicated instructions. She often will come to me with something she wants to eat, like a jar of salsa (which she eats on its own). I will say something as complex as "You can have that after you close the refrigerator and get me a bowl and spoon, and take off your top so we can put on an old one that can get dirty", and she will do all I say to get the salsa. I can ask her to get ready for school, and she'll find her shoes and backpack and walk to the door to head out to the bus. She knows what we are saying.
Lack of desire to communicate
I don't think this is it. Janey asks us for things all day long, and often she is frustrated that we don't get what she means. For example, her most used phrase for about a year now is "Snuggle on the bed" However, this can mean about 10 things, including "I want to snuggle with you", "I want you to get up from the bed (or couch) where you are so I can be there instead of you", "I am tired and want my pajamas on so I can go to bed" or "Stop doing whatever you are doing and pay attention to me", among others. She very much wants us to know what she is trying to say, but she doesn't seem able to narrow it down, even with us modeling a phrase once we do figure out what she means that particular time.
So----Why? Why is Janey's speech about the same as it was at age three, when she first regressed, and worse than it was at age 2, before she did? Why, despite years of speech therapy three times a week, has she made no progress that lasts? I don't know.
Many people have suggested augmented communication for Janey, like a speech program on the iPad. I downloaded the trial version of several such programs a few months ago, and have been trying hard to get Janey interested. She isn't, not one tiny bit. In fact, she now gets angry when she sees me showing them to her or even using them around her. She immediately grabs the iPad and switches to something else. Maybe I don't know how to teach them correctly, but she seems extremely bothered by the computer voice, although I've tried changing it. Janey is HUGELY sensitive to noise and sounds. She is an auditory learner, unlike many kids with autism who are visual learners. I think this makes AC doubly tough for her. She isn't interested in visual symbols, and she doesn't like to hear voices that don't sound like she thinks they should, just like she is driven crazy by off-tune music. So it seems like we are stuck with trying to get her to talk to conventional way.
I wish very much I could figure out how to help Janey with talking. However, I am starting to feel it's not going to happen. I'm not a speech therapist, but the very good speech therapists she's seen don't seem to have a handle on how to help her either. Maybe I need to just be grateful to be able to have her talk at all, and the truth is, I am, very much so. I know it's not a given, and I'm very lucky she does talk, even in a limited way, and that she does understand. I'd stop striving for more if she were happier. But when she screams and screams, I can't help but feel that she would be happier if she could tell us more easily what she is thinking. And so I will keep trying to figure it out.
Last night, I spent some time while not being able to sleep thinking about the possible reasons for Janey's limited speech, and eliminating them one by one in my mind, trying to get to the core of it. Here are the reasons I ruled out, and why...
Inability to produce words verbally
That one is easy to rule out, because Janey can say anything verbally. I know this because she DOES talk constantly, using delayed echolalia. Janey can recite the full script of movies and TV shows she's seen years ago. She can say several Three Stooges skits line for line. She remembers lots of poems she's heard at school, to say nothing of the thousands of songs she can sing. She has no problem producing speech sounds, with the exception of "th", which she has a bit of trouble with, but she says it anyway, cutely.
Lack of vocabulary
It would certainly be possible that Janey could have a lack of vocabulary, because the words she says via echolalia could be meaningless to her---just recited words. But that doesn't seem to be the case. The most vivid way this is shown is when she's in a very rare cooperative mood and she will allow herself to be quizzed on single words, with iPad programs that show pictures so she can name the words. She knows amazing amounts of words---mostly nouns, but some verbs and adjectives. She can name obscure things like "pelican", "castle", "earmuffs", "peacock" and more. We have watched her do this in amazement several times. She KNOWS the words.
Lack of understanding of spoken language
This would be more of a contender until recently. But Janey has shown more and more how good her receptive language is. The best way she shows this is by following complicated instructions. She often will come to me with something she wants to eat, like a jar of salsa (which she eats on its own). I will say something as complex as "You can have that after you close the refrigerator and get me a bowl and spoon, and take off your top so we can put on an old one that can get dirty", and she will do all I say to get the salsa. I can ask her to get ready for school, and she'll find her shoes and backpack and walk to the door to head out to the bus. She knows what we are saying.
Lack of desire to communicate
I don't think this is it. Janey asks us for things all day long, and often she is frustrated that we don't get what she means. For example, her most used phrase for about a year now is "Snuggle on the bed" However, this can mean about 10 things, including "I want to snuggle with you", "I want you to get up from the bed (or couch) where you are so I can be there instead of you", "I am tired and want my pajamas on so I can go to bed" or "Stop doing whatever you are doing and pay attention to me", among others. She very much wants us to know what she is trying to say, but she doesn't seem able to narrow it down, even with us modeling a phrase once we do figure out what she means that particular time.
So----Why? Why is Janey's speech about the same as it was at age three, when she first regressed, and worse than it was at age 2, before she did? Why, despite years of speech therapy three times a week, has she made no progress that lasts? I don't know.
Many people have suggested augmented communication for Janey, like a speech program on the iPad. I downloaded the trial version of several such programs a few months ago, and have been trying hard to get Janey interested. She isn't, not one tiny bit. In fact, she now gets angry when she sees me showing them to her or even using them around her. She immediately grabs the iPad and switches to something else. Maybe I don't know how to teach them correctly, but she seems extremely bothered by the computer voice, although I've tried changing it. Janey is HUGELY sensitive to noise and sounds. She is an auditory learner, unlike many kids with autism who are visual learners. I think this makes AC doubly tough for her. She isn't interested in visual symbols, and she doesn't like to hear voices that don't sound like she thinks they should, just like she is driven crazy by off-tune music. So it seems like we are stuck with trying to get her to talk to conventional way.
I wish very much I could figure out how to help Janey with talking. However, I am starting to feel it's not going to happen. I'm not a speech therapist, but the very good speech therapists she's seen don't seem to have a handle on how to help her either. Maybe I need to just be grateful to be able to have her talk at all, and the truth is, I am, very much so. I know it's not a given, and I'm very lucky she does talk, even in a limited way, and that she does understand. I'd stop striving for more if she were happier. But when she screams and screams, I can't help but feel that she would be happier if she could tell us more easily what she is thinking. And so I will keep trying to figure it out.
Sunday, September 8, 2013
YesNo for iPod --- discovered in desperation!
Janey's crying was less today, but this afternoon started to return. One thing we always worry is that Janey hurts physically someplace---that she has a headache or a stomach ache. We were trying to ask her that, which she sometimes answers. We've asked it by asking her "Do you need hurty medicine?" (meaning Tylenol) which she will answer. Today, though, she was screaming so much that she couldn't answer, and I was hugely frustrated, thinking that there should be a simple way for her to just push a button to say yes or no. I got on the app store looking for such a thing. I looked briefly at hugely expensive speech apps, knowing I couldn't afford them and certainly couldn't learn them in a few minutes. Then I found this app
Answers: YesNo HD
It was $3.99, and it looked very easy and like it would do what I wanted---just bring up a Yes/No screen. I bought it in a frenzy, opened it and found the default setting was indeed just a yes/no answer. I went back to Janey, asked her if she needed hurty medication, and showed her the screen, quickly hitting yes and no to show her how it worked. She immediately hit the "No" button. I then asked her a few other questions to see what she'd do, like did she want a hug, did she want bacon (which Tony was in the middle of making), etc, and she answered "yes". I asked the hurty medicine again, and she said, again, "no". So we had our answer!
It always feels weird to me to use software like that when Janey CAN talk. But she can talk in certain contexts, and she also seems to have a very hard time with "no"---she answers yes or nothing at all. I often find myself holding out two fists, labeled one "yes" as I wiggle it and then the other "no" as I wiggle it, and letting her pick a fist. That seems to work for her. I could still do that, but this seems like a more independent way for her to talk.
Looking at the software a little more, I saw you can make other easy choices available. I quickly took pictures of Tony and of me, and gave her a "Mama/Daddy" choice button. Just now, she said she wanted to cuddle. We usually assume that is with me, but we gave her the choice and she picked Daddy, so that is what they are doing.
Janey's teacher this year and her ABA specialist are going to work on augmented communication, and I am very excited about that. I think it might be a huge help to Janey, and something that might ease her frustration. She is still crying today, but for about 10 minutes after first using the Yes/No, she was quiet and happy. I'm going to try to add some more choices soon. Even if it only helps for little bits of time, that's better than anything I tried yesterday.
Answers: YesNo HD
It was $3.99, and it looked very easy and like it would do what I wanted---just bring up a Yes/No screen. I bought it in a frenzy, opened it and found the default setting was indeed just a yes/no answer. I went back to Janey, asked her if she needed hurty medication, and showed her the screen, quickly hitting yes and no to show her how it worked. She immediately hit the "No" button. I then asked her a few other questions to see what she'd do, like did she want a hug, did she want bacon (which Tony was in the middle of making), etc, and she answered "yes". I asked the hurty medicine again, and she said, again, "no". So we had our answer!
It always feels weird to me to use software like that when Janey CAN talk. But she can talk in certain contexts, and she also seems to have a very hard time with "no"---she answers yes or nothing at all. I often find myself holding out two fists, labeled one "yes" as I wiggle it and then the other "no" as I wiggle it, and letting her pick a fist. That seems to work for her. I could still do that, but this seems like a more independent way for her to talk.
Looking at the software a little more, I saw you can make other easy choices available. I quickly took pictures of Tony and of me, and gave her a "Mama/Daddy" choice button. Just now, she said she wanted to cuddle. We usually assume that is with me, but we gave her the choice and she picked Daddy, so that is what they are doing.
Janey's teacher this year and her ABA specialist are going to work on augmented communication, and I am very excited about that. I think it might be a huge help to Janey, and something that might ease her frustration. She is still crying today, but for about 10 minutes after first using the Yes/No, she was quiet and happy. I'm going to try to add some more choices soon. Even if it only helps for little bits of time, that's better than anything I tried yesterday.
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