I wrote the following email to my SLP. She had asked me on the phone what issues I was having (other than the immediately obvious ones that she could hear in a 3-minute conversation), and I couldn't get it together to answer her. So, I emailed her.
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I wanted to outline kind of what's going on re: the speech. I can't explain it when I talk (like when you asked me on the phone), but I think I can when I type. There is (and always has been) this massive disparity between my speech and my typing (but writing by hand is like talking).
1. I talk, but I don't always know what I'm saying. My staff says it's called "cocktail syndrome." I make some sense (sometimes, not always), but I don't actually understand my own words and it's not really what I want to say. It can make some pretty big messes. I also have little to no memory of verbal conversations (think 2nd percentile based on testing) while the rest of my memory is extremely good (so, imagine going to the doctor, not being able to convey what's wrong very well, and then leaving and having no idea what either of you said. Yeah).
2. Word retrieval. I'm forever searching down words I can't find. I try to talk around them, but you can only do so much talking around before you don't make sense anymore.
3. When I've lost my words, they're gone. I'm nonverbal until they come back, which, as I said, can be weeks. This is the big thing I need help with.
4. The more complicated the thing I try to say, the higher the probability that what comes out is echolalia. Like, if I'm trying to say something really complex or nail down a feelings word, I usually say "kitty cat" or similar. REALLY frustrating. Sometimes, no matter what I say, all I get is kitty cat.
Lastly, I basically don't know how to have a reciprocal conversation unless it's about one of a few highly, highly rehearsed topics. I can do my cat, my service dog, ASD (I'm kind of an online ASD advocate, so I write a lot, and I can spit back out things I've written) and, given enough time, can rehearse other topics (like I did before I called you today!). But running into someone in the store? Asking what I do with my time? Asking what I did when I went wherever? All of that gets turned back into one of my preferred topics... unless, of course, I simply walk away, which is also common.
I know I (sometimes) SOUND reasonably high functioning at first pass sometimes... but honestly, I feel pretty limited and believe that I'm capable of a lot more, verbally. Other people, especially those who spend significant time around me, notice it too, so I know it's not in my head. Also, I'm pretty sure I've lost some skills since you guys saw my last; my life has sort of been one ongoing regression, unfortunately (I went from living alone to having staff 40 hours/week, I no longer drive, I no longer work...).
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Anyone else have similar speech issues? Have you had speech therapy? Did it help?
29 Jun 2011, 8:24 pm
