Give me a week?

There’s a lot going on around here.

In addition to my on-again (but never really, totally on), off-again speech, I’m struggling to understand people, too.  I’m pretty good with Mom, cause she goes nice and slow and doesn’t use a lot of words, but most people are hard to understand.  The TV is impossible, even Food Network (Paula Deen comes the closest to what I can follow).  On top of all that, I can’t follow text very well.  Every time people email me or leave comments or whatever, I’m like, “I’m sorry but I can’t understand what you mean.”  Oh, and my memory’s not right.  I have almost no memory for language at all… as in, conversations go over my head, and I asked Chloe multiple times what she did yesterday in the same conversation.  It’s frustrating, and scary, and confusing.

Just so that I don’t feel the push to post every day or two this week, I’m just letting everyone know that I’m going to take the rest of the week off, potentially.  If I feel the need to post, I will, but I’m not going to push myself right now.  At the very least, you’ll get pictures of my meeting with Lexi Mae next week.

Until then, right?

Over and out.

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10 thoughts on “Give me a week?

  1. You wrote:

    ‘I’m pretty good with Mom, cause she goes nice and slow and doesn’t use a lot of words, but most people are hard to understand…’

    When people respond to you by writing (and when you write), it is YOU who controls the pace of things. Since ‘nice and slow’ is important to you, it would seem to me that writing – both yours and that of those who respond – would be an ideal medium for you. It is entirely within YOUR control how fast or slow you need to write or read.

    You also mentioned that Mom “doesn’t use a lot of words.” That’s nice – but it goes right back to my first point, which is that via the medium of writing/reading, YOU entirely control how many words you ingest and at what pace. While you complain that “most people are hard to understand,” you strongly imply that this is because most people use too many words. While this is certainly a possible scenario, it is not categorically true. You will find that out the first time you are left at a complete loss because someone did not use ENOUGH words that were comprehensive and clear.

    I have spent a lot of time trying to address some of your questions and problems, and it seems that such an effort is not at all what you really wanted. I even encouraged you to ask questions when there was something you did not understand. You never did.

    What you have chosen to do instead is complain THAT I responded and about HOW I responded.

    After all of my effort, only today you write: ‘On top of all that, I can’t follow text very well. Every time people email me or leave comments or whatever, I’m like, “I’m sorry but I can’t understand what you mean.” ‘

    Then why do you solicit and allow comments? Using this medium, comments have to come via text. What would be a helpful alternative to you? Mental telepathy?

    If I seem a bit frustrated, it is because I am. You ask questions and allow for comments, but if the comments go anything beyond simple affirmation of you, then you seem to have absolutely zero interest in engaging further or even trying to better “follow text.”

    In other words, you seem to be able to “follow text” – but only when you want to.

    For being as young as you are, you are an incredibly insightful and great writer. The sad thing is that AutisticSpeaks, but only very selectively “listens.”

    Instead of soliciting comments and then complaining about them, you would do yourself and those of us who have spent hours responding to you a huge favor by simply disabling comments or making it very clear that you want none.

    • Cindy, I agree with you regarding speed and writing. Only, when by the time I get to word four or five, I no longer remember words 1-3, and I keep going back until things don’t make sense anymore.

      I was speaking of Mom talking to be verbally and going nice and slow.

      I do not ask questions about what you have written because I would look like an idiot, because I don’t understand what to ask about. Also, I never asked you to leave novel-length responses on my blog. I asked for “suggestions,” which implies brevity, to some extent.

      I never complained about your responses. Not one bit. I never even THOUGHT of complaining. I simply said that I couldn’t understand, the burden being on me.

      I allow comments because I can understand to an extent. No one has EVER left a comment of the length you do, as a matter of fact. Also, comments are helpful to readers.

      I am offended that you think I choose what I can follow and can’t. Should you keep your comments shorter, I may well follow them, too.

      I do not listen selectively. I simply CAN. NOT. UNDERSTAND. Need I say it again? I DO NOT UNDERSTAND. I pick out one or two bits and respond to those, because it’s the best I can do. You just got done telling me, I believe, that perhaps it’s not me who can’t follow but the other person who does not make snese. And then you got upset with me for not understanding!

      Again, I never asked you to leave novels on my blog. I never complained about your comments. You, as everyone else, are welcome here. But please, don’t get upset with me for… doing what I said I do.

  2. Cindy, imagine you were in a car crash and got a Traumatic Brain Injury. Suddenly, you can’t get words out; can’t understand some of what people are saying; can’t read things you used to before your accident; can’t remember what you said; have weird sensory issues.

    Now, imagine you’re having problems like that and you don’t know why (no TBI, no other immediately obvious cause). That is what @AutisticSpeaks is talking about. You’re frustrated? Think how *she* must be feeling!

    For me, very frequent seizures caused a lot of speech/language, thinking and memory problems. Most of my seizures don’t look like what most people think seizures look like, and they were written off as “bizarre behavior” for years. Things are not always what they seem.

    (Also – I’ve always produced good writing. I’ve sometimes took an hour to write a paragraph, or given up because I didn’t have the words at the time, or didn’t even try to start. Again, things aren’t always what they seem).

  3. Full disclosure: I am Lydia’s brother-in-law. I acknowledge I know *very* little about autism. I’m learning a bit from Lydia, and find this blog and her twitter fascinating.

    So, really, who am I to judge. But, @Cindy, I have to ask; are you trying to help Lydia, or are you trying to show how deeply knowledgeable about autism, and being autistic, you are?

    Are you seriously having a bout of righteous indignation because Lydia is not responding to your deep 46-year-old knowledge and experience?

  4. Oh Lydie I’ll be here when you need me know that. Sissi sends kitty purrs and Indy Sends Puppy kisses

  5. Cindy, I am appalled that you would think even responding in that tone or matter to Lydia is even remotely okay. Maybe to an outside viewer, this is how it might seem but I find it ludicrous that you couldn’t find a better way to express your current feelings. You have no remotely idea how it feels to be Lydia or what she is or is not capable of, only Lydia does, WHICH I think she’s done a great job explaining that. She can’t understand or make out what is said sometimes. That is not her fault. Some things she understands, some times she doesn’t – what is so “bizarre” about that?! My jaw still hasn’t lifted off the floor from reading your reply.

    My son is probably going to be diagnosed with autism and/or a psychotic/mental disorder. I pray to the almighty God that other people have more understanding and less ignorance than you.

  6. Oh, thank God you and others have responded to her. I read it last night and was really disheartened by her change in tone from her previous comment on another one of your posts which I really had appreciated her perspective. I completely understand what you mean about not being able to follow something and then not knowing what you would ask about because you don’t grasp enough to know what your confused about. For the record, you communicated just fine that you do not understand. Perhaps SHE needs to read her very first comment she wrote to you. She has really taken something personally that you have stated you cannot do.

  7. Cindy I have to say as a mum to two severely autistic girls you may have autism but from where I sit you don’t “get” autism – please note I said from where I sit. You certainly don’t “get ” Lydia and have no right to assume what she is or is not capable of. I salute Lydia for her honesty and bravery in sharing aspects of her life on this blog. I for one have learned much from her and am pleased to know her through the internet. I don’t mean this in a “back off” manner but it may be a symptom of your own autism that you write such tomes, and expect such affirmation in response and dialogue on your terms.

    Autism is a spectrum disorder and as such means different things to different people

  8. Lydia, you take all the time you need.

    This is your blog and you get to be in control, no matter what. You are a wonderful person and you have taught me so much.

    It may take a while, but I will always, eventually, get to read what you have written. Your efforts are very much appreciated!

    Hugs,
    Mrs. E

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