Susan's Blog

Tuesday, November 11, 2008

The Other Conversation in My Head

Nat keeps sounding tiny and spacey on the phone when he calls from the House. The staff told me that the only decent phone is in the livingroom, where there is a lot of noise. I keep forgetting to go and look at the phone setup when I’m there. When I bring this up to Ned, he talks about buying the House a really great phone, one which could be moved to a quiet room. That would be a solution to the specific problem of being able to hear Nat better, and get him into a quiet space. But to me there is a bigger problem: the way that I feel when I hear Nat’s little, spaced-out voice, which then makes me wonder how he is feeling.

Maybe I’m projecting, you might be thinking: You are layering onto these conversations your own feelings of missing him and self-doubt. You would be partly right; how could I help but project? A friend told me recently that I always have at least one other conversation going on in my head, in addition to the “real” one in front of me. I had never thought of it in just that way before, but it is true: I will be talking to someone and hearing their words, processing and responding to them, but inside I will be imagining all kinds of other words, things I could say back but I am censoring, that might feel rude to ask, that might sound flippant, disrespectful, and all kinds of mean and nasty. Irrelevant stuff, inaccurate stuff. I have learned over time to sort out what can be said and what should be thought, but I still do not get it right very often, as you can see by what I write on my blog. People ask me, “How can you put stuff like that out there?” And I feel a little proud but also a little hurt by it, because there is this implication that I’m maybe freakish somehow by being so — “brave,” they say — but what do they really think? (There I go again with my alternate conversation.)

Nevertheless, I wonder. People say, “Your heart will tell you what the right thing is.” I always feel frustrated by that one, as well. I listen to my heart, but with my ears which are connected to my brain. My brain interprets my heart; my heart can’t do anything but send out feelings (and blood and all kinds of warm and lovely). How exactly to you “listen to your heart?” That’s fucked. I think that to listen to your heart, you have to look at all the evidence in front of you — all of it — and you also have to figure out why you always feel a certain way when confronted with this issue. You have to pay attention to both conversations going on, in other words.

So while all around me there is evidence of Nat thriving in the House: ability to converse mostly on his own (sometimes) on the phone, no outbursts, utter willingness to work, play, attend school, learn, and care for himself, there are also the things I see and feel here and there that are the other conversation in my head/heart. I mean things like the spaciness of his conversation at times, the spaciness I see when he’s at home, the je ne sais quoi I still need to hear about his day. The staff does everything right in reporting to me: school day, goals accomplished, demeanor at different times, etc.

But then there is the feeling I have that I am not getting what I need here. There is something I am still not knowing, and then that ends up meaning that I don’t know what Nat is feeling about the whole thing. That, of course, is the puzzle piece I deal with these days. Not the “mystery of autism,” or the “need to solve the puzzle,” but the question of “how does Nat feel about being in the Residences?”

What if the “evidence” everyone presents is just others’ interpretations, others’ attempts to draw a conclusion of success, and yet is not accurate in terms of how Nat is feeling?

And the real question is: how do Ned and I weigh the benefits of Nat’s living outside our home (for there are many) with all of the unresolved, unknown doubts and feelings?

How do you resolve these kinds of Big Questions? How do you give credence to/dismiss the other conversation in your head?


Sue, I think you are missing something important on a micro level: It is DIFFICULT to talk on the phone. My typical 10-year old daughter sounds tiny on the phone… and my typical 4-year old daughter (who can talk you under a table in person) is almost impossible to understand. I speak a foreign language — but not so well on the phone. And when I interview potential au pairs on the phone it is SO hard for them. I would venture to guess that most of your other phone conversations are with your husband, sister or friends for whom the phone is not an issue.

When you look at the bigger picture and how well Nat is doing in The House, please just remember the above. –Cathy in CT

— added by Anonymous on Tuesday, November 11, 2008 at 8:53 am

What I find amazing is that this residential places can charge around $250,000-$300,000 per child/ per year yet can not even purchase a decent phone for the kids to phone home and practice their phone/conversational skills. I wonder where the big money really goes in these places.

— added by Anonymous on Tuesday, November 11, 2008 at 8:53 am

I can’t answer your questions with so little experience behind me, but I can empathize. My little conversation in my head constantly going on will be probably cause the deconstruction of my psyche at some point! Hang in there….and that’s all I mean by that, hang in there! lol

— added by Bonnie on Tuesday, November 11, 2008 at 8:55 am

I have written you this before. My 22 year old son went to college in the mid-west and stayed for a job there. We live in New England. EVERY TIME I talk with him on the phone he sounds remote, far away and yes, tinny. With his father, not so much. Talking sports, etc., with his father I hear him speaking in a raucous “man” tone. Was your son a phone talker before moving out?

It is more to do with the mother/son relationship than the idea that the grown son is unhappy. As you said, every sign shows you that your son is fine and thriving in his new environment.

— added by Anonymous on Tuesday, November 11, 2008 at 8:58 am

My son’s been in residential since he was almost eleven. He’s now fourteen. We have phone conversations where we go through the same topics that are on his mind. It’s a pattern that he is comfortable with. It’s his way of connecting. Every now and then we can get some real information out of him but it is hard. The phone calls are valued not always for substance, but for the connection. It doesn’t get a whole lot easier but there is solace in the fact that he seems happier in a place that can attend to his need for structure and where he can feel a sense of accomplishment and independence that he wasn’t getting at home.

— added by Anonymous on Tuesday, November 11, 2008 at 9:59 am

Echoing what Cathy in CT had said: some of us just have great difficulty in using the phone, in part due to auditory processing issues.. I always come off seeming ‘spacey’ on the phone, simply because it’s that much more difficult to understand what the person on the other end is saying to me.

— added by codeman38 on Tuesday, November 11, 2008 at 11:04 am

I feel the same way about my daughter in residential school. I post about her when she comes home to help me sort it all out. I think that she is happy and that’s a big part of what life is all about. But the difference between you and me is that my daughter is non-verbal and cannot talk on the phone–so I have to wait to see her and intuit her feelings.

— added by Holly Nappi Collins on Tuesday, November 11, 2008 at 12:12 pm

I never have been able to get my autistic son (aged 11) to talk on the telephone. He understands the concept of it, but freezes up whenever anyone tries to engage him in conversation (i.e, grandma just sent him something new and he is calling to say thanks). He will only give yes or no answers and I usually have to listen in to what he is being asked and then tell him what to answer. I had hoped that over time conversation would become easier for him but that hasn’t happened.

— added by Sharon L. on Tuesday, November 11, 2008 at 5:29 pm

My other autistic child (son) had the same issues of not wanting to talk on the phone and would do the same thing: quick yes or no. But within the last year (he’s 14) he has become so much better talking on the phone…

— added by Holly Nappi Collins on Wednesday, November 12, 2008 at 7:36 am