“Absolute silence leads to sadness. It is the image of death.” ~Jean Jacques Rousseau
We’ve been here before. Pearlsky does not talk. She does not point. She does not appear to purposely look. So far, through the last eighteen years, no one has figured out how to have Pearlsky communicate.
On a day in and day out level, I can deal with this. Just like a parent knows when an infant is hungry or in pain, I get that with Pearlsky. Sometimes I need a clock to help (oh, she’s probably hungry now) or a calendar (mittelschmerz, pms, etc.) or just guess, but it gets figured out.
I wrote this post over a year ago about not talking with Pearlsky in the evenings. We sit here on the computer, watching television, hanging out, but there is no talking. How much can you talk with absolutely nothing coming back? Not a snide look, a response, a laugh, nothing but silence.
I am told that Pearlsky reacts when I come home, that she moves, makes a sound, has a seemingly positive reaction when I come in the door. Sort of like trying to see if the refrigerator light really goes out when you close that door, I do not see Pearlsky’s demeanor change, although I believe those who tell me. I am told that when I am not around in the evening and someone has Pearlsky listening to some children’s show, if she gets upset, they change the channel to the political talking heads that I would have on (or, as the nanny’s refer to it, “that crap”), and she is usually consoled by this.
Ken wrote this (in part) in a comment to one of my posts:
Bennett? When I enter or exit a room, most of the time I feel like he could care less. He doesn’t really let me hug him…he will on occasion but never for long and always as he is pulling away from it. He’s never kissed me and he stopped saying ‘Hi Daddy.’ well into his seizure times. Lately, even repeating the word ‘Daddy’ seems to be slipping away, I don’t even know why. Like he’s forgetting it.
This hurts on levels I cannot describe to people. I think you understand what this feels like, but most others do not. I just don’t know. And frankly, Bennett communicates WAY more than Pearlsky does, and I feel it on a level so deeply that there are days like yesterday where I ponder very strange thoughts, like why am I even here, so I can’t imagine how you learned how to deal with your emotions on the subject.
How DID you come to terms with it? You must have, at some point, come to some crossroads, some pivot point, where you realized you might not, if ever, be able to know for sure, how she feels, what she thinks, about…well about anything. How did you get through that? Can you talk about that experience? I need help with it, and seeing it through your eyes might be very helpful to me.
Most of you reading this have kids who do communicate to some degree. I can only assume that your kid has at some point reached out to you, or hugged you, or looked at you, or said (signed, wrote, pointed) “I love you,” or smiled at you, or kissed you, or in some way communicated such.
I hug Pearlsky and get nothing back. It does appear to comfort her when she is distressed, but she does not reach for me. For years, every night I would hold her before bed, and I would kiss her cheek. I would then ask her for a kiss and put my cheek against her lips. For years. Never got the kiss. I’d settle for a raspberry.
It still hurts to this day. I don’t live my life for validation, in many ways and venues I don’t really need it. But, alas, I am as insecure as the next guy parent. There is a total lack of feedback in any situation.
They say (and who the hell are “they” anyway?) that worse than hate is the absence of emotion. At least hate shows some emotion towards the object of hate. From Pearlsky, all I get is the absence. No validation, no refutation, no affirmation, no nothing.
Ken asks “How DID you come to terms with [lack of feedback]?” There is a basic assumption in there. And it ain’t so. I don’t know if I will ever come to terms with it. Do I obsess about it? No, not at all. Do I tell her how I feel about her? Yes, every night I tell her I adore her. Do I hear the silence in return? Yes, I do, and it’s deafening.
I do get what I need from the little things, the almost unnoticeable things. I know that I can console her. I know that if she is upset and I am in another room, when I come in she will often react positively. In subtle ways, perhaps, but react she does.
This post is NOT about whether Pearlsky loves me or not. That is not the issue, not the point. The issue is that I don’t get any feedback at all. One gets more feedback from a dog, even, hell, a cat. My goldfish would come to the top of the tank when they thought I was bringing food.
This post is NOT about methods of communication. I read what some of you wrote in the comments and I am looking to learn more, but not in this post.
I do not accept the idea that Pearlsky will never communicate. I just hope she does before I die.
Ouija boards have always creeped me out. From a very young age, and to this day I will not use one. Maybe it is time to start?
Your guess — or perhaps the Ouija’s — is as good as mine. My Sophie doesn’t overtly communicate either. She doesn’t reach out to me or kiss or anything although she does lay her head on me and her eyes speak worlds.
All I have to add is that ouija boards have freaked me out ever since 5th grade, when I read a Young Adult fiction book about a ouija board that demonically possessed its teenage user. ::shudder::
It did not occur to me until you actually addressed it that I had made an assumption, but I see it as clear as day now obviously. I wonder why I did that? I think the reason is that I was expressing instead one of my OWN fears, and of course because half the time my head is wedged so far up my own ass I can’t see the forest through my lower intestines.
Anyway, sorry about that. I did not mean to presume or assume that you had come to terms with anything. Maybe I should get a job with Reuters? In this world of disability, I am a newborn and sometimes, I dunno, I say and do things that aren’t well thought out or well-conceived.
I think some projection takes place within me when I read any Veteran’s blogs. I try to imagine where I will be in 2, 5, 10, 15 years with Bennett, and the truth is I need to stop doing that. It accomplishes very little but it feeds my fear and doubt in many ways and that does not help me. It is very stupid to do so because no two people are the same. No two people’s CIRCUMSTANCES are the same.
I’m not going to attempt to say anything in regards to your answer that you might typically get either, except that it fucking sucks. But you know that already.
And stay away from Ouija. I don’t want to get sucked into an alternate dimension, so don’t risk it you crazy bastard.
I get the post. Just a bit of an aside…re: your silence in the evening. I wonder, sometimes, with kids who cannot express themselves that it must be, sometimes, really nice to be around someone who is just quiet for a change. No expectations, you know? All day they are surrounded by people who chatter away at them. Who knows how annoying it might be after a few hours of listening and not being able to say, “Just shut the fuck up please.” It may be she appreciates your quiet times more than you imagine…peace and hanging out with Daddy. Cool.
As for Ouija boards…a big joke. Falls under the same category as “assisted communication” on a computer keyboard. What comes across is what people want to see or NOT want to see, whichever is scariest! It’s all “piffle”.
My son cannot communicate with me either. He cannot speak. He cannot point or use sign language. He has never said any words, though he can make sounds. I don’t think he’ll ever say “I love you” or anything else. I’m not sure if he can comprehend even the most basic things. What’s doubly hard with my son is that he is also unable to make any facial expressions – even with his eyes – so I don’t even get to see a smile on his beautiful little face. There is very little reward for a parent in this type of situation which makes raising him all the more difficult…Anyway, I get it.
Thank you for sharing this. My son is disabled, although he can communicate in many typical ways. I work with children who are not able to communicate and while every family is different, it does help me as a member of their team to have some insight into how they may be feeling.
For the longest time I wasn’t sure that Izzy knew I was mommy because she didn’t really differentiate between me and strangers in any obvious way. Sure, I told myself that she relaxes with me more, she looks at me differently and whatnot, but there were no hugs, reaching out, smiles or crying in my absence. She still doesn’t hug me or kiss me or cry when I’m not around, but now she smiles at me and follows me with her eyes and reaches out and touches my face, and smacks me – and I don’t take any of it for granted. She doesn’t really make a peep and I’m quite sure she will never tell me she loves me, at least not with words. Not hearing her voice is one of the hardest things to deal with for me. Sometimes I wish she had some separation or stranger anxiety, or just a itty-bitty distress to show that she misses me. However, she doesn’t really cry unless in great pain, so she might miss me when I’m not around, she just doesn’t express it by crying. Or at least that’s what I tell myself. I used to feel really guilty for not talking to her more, but you can only say so much without feedback, plus I only have so much emotional energy for guilt, so I got over it. Of course, I talk to her, but I don’t feel the urge to blab constantly.
Agreeing with everyone that the board is creepy even if it is piffle.
I just read the most recent two posts at Yes or No (linked on erika-Izzy’s Mom’s blog). I thought she wrote insightful things – just suggesting you read also – the second post down.
i like it. i like it i like it i like it i like it i like it i like it i like it i like it i like it i like it i like it i like it i like it i like it i like it i like it i like it i like it i like it i like it i like it i like it i like it i like it i like it i like it i like it i like it i like it i like it i like it