Like, as vs is
I am getting taken to task for some comments in a very recent post.
I was in a discussion with one of Pearlsky’s therapists about having conversations with Pearlsky in the evenings. I said (both in the meeting and on this blog) …
I talk very little. There is no conversation, that takes two. I try to tell her what I am doing, or going to do, but it is very quiet. You try it. Take a stuffed animal, and live alone with it for a month. Talk to it, every night, conversations, interactions. See how long it lasts.
And a bit later I expounded on it …
When asked “How can you compare Pearlsky to a stuffed animal?” I said …
Um, no, that was my point. It was a physical analogy, sure, but she is so much more. But outward communication-wise, she acts like a stuffed animal.
Since I posted that, many of you have sent emails, two texts, and at least one comment, that have attempted to rip me a new asshole (and, thank you very much, but the old one is just fine). So, I am going to explain what I said.
Fact: When talking to Pearlsky conversationally, she does not respond. Nothing. She does not turn to face you, she does not smile (nor frown), she does not change her movements, nothing. There is no visible way to know if, in fact, she even hears you, let alone is listening. There is no discernible response. Those are simple facts. She does not answer questions, does not ask questions, does not retort.
Fact: When talking to a stuffed animal conversationally, it does not respond. Nothing. It does not turn to face you, it does not smile (nor frown), it does not change its movements, nothing. There is no visible way to know if, in fact, it even hears you, and is doubtful it is listening. There is no discernible response. Those are simple facts. It does not answer questions, does not ask questions, does not retort.
Now, Pearlsky may very well (and probably does) not only hear you, but understand you. She may be thinking of responses, she may be changing emotion. But there is no way to tell.
The stuffed animal does not hear you since it cannot hear. It does not understand you. It is not thinking of responses, it is not changing emotions. There is no need for you to be able to tell, because it is not happening. Trust me.
I was being asked about having conversations with Pearlsky in the evening. I wanted people to learn some empathy, to see it from MY point of view. That was the important thing at the moment. I have found that the best way to explain to people what life with Pearlsky is like is via examples, things they can directly relate to.
How will anyone else learn what it is like to try, for twenty years, to have a conversation with Pearlsky, every night? So I tried to reach for an example that in fact they could try, or else somehow relate to.
Possible Single Dad example 1: I could have said, “I will give you Pearlsky for twenty years, every evening at least. I want you to talk with her, conversationally as much as you are saying I should. Let’s meet again in twenty years.”
Possible Single Dad example 2: I could have said, “Go get yourself a severely disabled child, one who has absolutely no communication at all, does not react to your speech or words in any manner, and try to have a conversation with him or her every night for twenty years. Then come back and tell me I am wrong for failing to be able to do it for that amount of time.”
Possible Single Dad example 3: I could have said, “A stuffed animal physically reacts as much as Pearlsky does to conversation. I am talking purely in regards to physical signals that you are being heard, some type of recognition of your words or voice, having nothing to do with understanding or anything else. You should try having a conversation with a stuffed animal to the extent you want me to converse with Pearlsky and see what it does TO YOU to have no response whatsoever to your voice or words. You should do this every night for as long as you can, for the length of time you are castigating me for failing to do. This will show you that in order to hold a conversation there needs to be some form, maybe any form, but some modicum of feedback, of recognition. Most of us will not talk to our spouse if they refuse to look up from the TV and acknowledge our presence. You just get pissed off and walk away. I lost the ability to talk to Pearlsky conversationally, every night, after about fourteen years. That is 5110 evenings of talking where the physical feedback and physical reaction was the same as if I was talking to a stuffed animal. Did Pearlsky get something out of those conversations? Probably yes, BUT THAT IS NOT THE POINT, this particular issue is about ME, my total and complete failing at social interaction with my daughter. Here is the definition of “interaction” (yeah, from wiki) “Interaction is a kind of action that occurs as two or more objects have an effect upon one another. The idea of a two-way effect is essential in the concept of interaction, as opposed to a one-way causal effect.” I lost the emotional ability to have an evening with complete and total one-way “talking at’s” (conversation takes two or more people) with Pearlsky half a dozen years ago. Do I suck? Absolutely. (Look at this post, written three years ago, on how I suck for not talking to her). Yes, I suck, I know it. I own it. But NOT for comparing her to a stuffed animal.
I should have chosen one of the first examples I guess.
I never said Pearlsky is like a stuffed animal. I never said Pearlsky is a stuffed animal. I did say that Pearlsky has the same physical reactions and the same physical responses to being spoken to as a stuffed animal does. Five thousand one hundred and ten times out of five thousand one hundred and ten times. That, my friends is 100%.
And I do appreciate every email, text, and comment. Please don’t stop.
SD your loyal followers and your children know you your thoughts and your analogies you need not explain them to the few who are simple minded or stuck in the literal. Your a good man (from what I have read here) but more importantly you are a great father & an amazing advocate!
Thanks for the good words … I try my best.
I have taught children with intellectual disabilities (severe) for more than 20 years. Many of my students are like your daughter. There is a lot of research that deals specifically with communication with this population. We use a lot of augmentative communication devices (yes, some switches). I have seen a tremendous amount of change in some students when they are able to be “heard” although they are non-verbal. I have also taught students who have no reaction. There are many ways to use what you know a child likes (parent interviews, observation, etc) to allow them to use devices with purpose. Yes, it is possible to have a child not motivated by anything. For some it is just being placed in a different position (maybe they smile, stop crying etc). I agree just hitting a switch is useless but do feel the teachers and therapists care about your daughter and are trying to provide stimulation for her, Our job isn’t easy either. We are expected to modify a regular curriculum for students who sleep or seizure all day. WE know it is ineffective but we do our best to make it work for our students along with caring for their numerous personal needs. Trying to help your daughter does not make them stupid because in most cases, they are trying all they know to do with children who have very limited cognitive functioning.
Teresa: I agree with you on all points. Note, I never called “them” “stupid” although I have wanted to. It is not because they failed to find Pearlsky’s communication channel, it is because they have repeatedly ignored what I have told them. I have specifically told them that I can get her to stick out her tongue about 80% of the time, on request. They refuse to try to use this, improve upon it, for attempting communication. I told them last year about the eye gaze seemingly happening. They have not tried that, just switches, and using them wrong. You want to try? The airline ticket is on me …
Your extreme and loving quality of care for you daughter constitutes the highest level of communication possible; sometimes augmentive, facilitated, eye gaze, switches, etc just do not and cannot ever work. My son is alert, responsive to smiles, laughs at tv…but in 10 years of trying, no communication device works,,,so ya just love ’em as they are…that’s ok.
Yet on some level I am sure there is some communication with you and your son. After all my shouting that Pearlsky has NO communication, I would not dare to
admithint that maybe I understand her at times.I think some people just fish around for a reason to rip someone else a new one. It is very obvious to me that you love and protect Pearlsky ferociously. Until somebody has lived your lives, they have no room to judge.
I am sorry they do not listen. I have a student who currently smiles if he wants something. We will verbally give him choices and wait for the smile. If I give him a switch he looks away. Teachers and specialists need to be willing to utilize whatever works. Augmentative communication is not for everyone. A lot of times specialists go with the latest trend when individualization is the key. In our district some of them serve numerous skills and are spread very thin. Of course this is not an excuse for incompetence . What we hear most often from specialists is the teachers know how to do it so direct services are limited. There are certainly ways goals can be written to make sense and provide a valuable environment for your daughter
Well, I’m someone who would shrink from the stuffed animal analogy but know that it wasn’t literal. I’ve actually compared my daughter to a dog, and she’s gotten the short end of that stick as dogs are far more capable. And I agree that your original post was far more about you and far less about Pearlsky. It was about the great toll it’s taken being her sole caregiver for two decades. I got that. I read somewhere that unconditional love — one moment of it — invalidates a lifetime of uncertainty and doubt. If I had the presumption, I’d eliminate your uncertainty and doubt and prove your unconditional love.
I do think your use of a simile in this way has a lot more power to impart your experience to your audience, than a phrase such as ‘a severely disabled child that has no communication’ – which is a hard concept to relate to unless you’ve lived it your self.
I’d stick with it.
Leave it to the ignorant (and sometimes even those who should know better) to jump on the judgey-wagon. I am sure having both to deal with the difficulties, as well as the exacerbation caused by others can be overwhelming. Particularly if such people can attack you via phone, email, and wherever else. As mentioned above, there are those of us who understand what you meant by your original statement and do not need it explained. Besides, you write here for yourself, we are merely interested onlookers to the going-ons of your mind. We are fortunate. You have every right to say how you think or feel without being water boarded for explanations and answers. Bah humbug to the humbugs who bothered you.
Oh SD…. I <3 you from the top of my head to the tips of my toes. It shouldn't take a Mensan to get your explanations and comparisons. Don't ever leave us (she said selfishly). And don't ever change.
Single dad, I actually think it was very brave of you to put yourself up for scrutiny like that when explaining your interactions with Pearlsky. I think that maybe if you had more of a break from time to time it would have been easier to work at interacting with her.
As a special education teacher of students with severe multiple disabilities, I thank you for your honesty.
Lisa
Funny. My husband and I sometimes compare our Andrew to a dog (although as Elizabeth notes, dogs are far more capable), and note how horrified others would be if they heard the dog analogy. But there are fewer things Andrew loves more than cuddling and getting scratched behind his ears. He even makes this purring-like sound when we do it. Therapists, in their perpetual optimism, are certain he will be able to use some kind of an augmented communication device one day, but I am highly dubious.