Sunday, July 15, 2012

I thought I had heard it all...



I thought I had heard it all.  Between all the things said to me, and all the stories from my friends, I thought there wouldn’t be a response to autism that could surprise me anymore.  Apparently I was wrong.

Last night we had some people over – to be nice I won’t expand upon who they were.  Well as usual the topic of autism came up and because they didn’t know a lot about autism we spent quite a bit of time talking about it.  We were talking about communication and I showed them a PECS app on Skylynn’s iPad and her morning and night visual schedules.  At this point one of our guests piped in “you should teach Skylynn Chinese.”
 I looked at him sideways and said “we need to teach her English first.”  At that point this man started explaining how Chinese characters mean an entire word just like PECS pictures do.  Ok, yeah, that kind of makes sense.  So I explained that was interesting but not useful in Skylynn’s everyday life.  At which point he spent 5+ minutes arguing why we should teach Skylynn Chinese.  It was aggravating because for obvious reason Chinese characters are incredibly useless in Skylynn’s life.  I explained that Skylynn’s classes and therapy all use pictures and visual cues so it is a tool that is useful in all aspects of her life.  At which point he told me we should have all her therapist and schools switch to Chinese characters.  Grrrrrrrrr!  At this point Nate explained it was a means to an end and we really were trying to teach Skylynn useful skills that would result in her speaking English just like the world around her.  The argument would have continued but another guest asked a different question to move the conversation along.

Then the topic took another turn for the worst.  I was explaining ABA and how it took Skylynn a few months and a 40 step process to learn to sit in a chair quietly so she could pay attention in class.  This guy piped in something along the lines of “if you could magically learn Skylynn’s language all your problems would basically be solved.”  Can I smack my forehead in public and it not be rude?  Really wanted to.  So I explained autism isn’t just about language, it is something that affects all faucets of a person’s life.  He continued to argue with me that all we needed to do was learn Skylynn’s secret language.  So at this point I explained that people with Asperger’s don’t have a language delay but still have significant difficulties due to autism.  He still argued with me that we needed to learn Skylynn’s language.  So I explained Carly Fleischmann and the fact that she can fluently speak her mind through typing on a computer but that she still has significant difficulties due to autism.  I explained some of her sensory difficulties to which he replied “well that must be something else – some neurological condition.”  Which I said “yeah, it’s called autism.”  At this point Nate tactfully changed the subject.

Seriously?!?  Who is this guy?  Well, I mean I know who he is.  But really who argues with an autism mom about autism to such a ridiculous degree?  As if, all the sudden, he knows more about autism than me because he has sat in a room talking about it for a few minutes.  Grrrrrrr!  I know this is normal but the ridiculousness of Chinese characters and learning Skylynn’s magic language are a bit beyond me.  I get so tired of this kind of crap!

14 comments:

  1. i might have slapped him on the forehead. i'm not as patient as you.

    ReplyDelete
  2. I can't even...wow...you are waay more patient than I am....

    ReplyDelete
  3. You are way more patient than me. I can't even fathom what they were thinking. My son Connor has Asperger's and while he can talk (I'm not sure I would go so far as to say communicate most days more like talk at us) I can guarantee that gentleman that does NOT solve all of his problems. Man I wish. Anyway I'm amazed you did so well, good for you!

    ReplyDelete
  4. wow, i am dying right now. knowing me, i probably would've just gotten up and walked away, probably left my own house due to the intense need to slap him. holy crap, that is a new one.

    ReplyDelete
  5. If it's any comfort - My boys are high functioning with advanced vocabulary - the suggestions we get can often be as ridiculous. It shouldn't be that hard to just say, "Wow. It's amazing that ____ has come so far. You are all doing a great job." (maybe the guy had Asperger Syndrome and is currently perseverating on Chinese Language)

    I try to appreciate that people want to help - or be useful - but sheesh!

    ReplyDelete
  6. Yikes! They must of been a blood relation, someone you work with, or a sister's new boyfriend.. I consider myself patient, but you might be a saint!:)

    ReplyDelete
  7. My head hurts from all of the smacks I've had to give myself when given "advise" as to what we are doing wrong, etc. 'Dad of 6 Autistic Kids'

    ReplyDelete
  8. Sometimes, you just smile and nod. "Ah, yes, Chinese, we'll look into that, thanks. Meanwhile, back here in reality..."

    ReplyDelete
  9. Seriuously? Not to sound horrid, but it's times like this I wish we could carry around a toy bebe gun, and when people like him say stuff like that, shoot him in the arm. You have way better tollerance than I do. lol

    ReplyDelete
  10. Wow. I would've asked him: What's the Chinese character for SHUT UP AND LISTEN? I swear, there should be compulsory ABA for smug clueless a-holes.... Seriously, you did very well not to sat that or worse!

    ReplyDelete
  11. I understand this so well. I went through something like this with a guy who was a step father to a child with Autism. He did not raise this child or really work with him but he thought knew so much about it. He did not stay in this child's life either. He was trying to tell me all about it and I am raising a child on the spectrum. I work with my child on a daily bases. He tried to tell me that we should not have a fear of getting our children vaccinated. I have gotten them vaccinated and often wonder if I should have done things differently. He told me that I was stupid for thinking that it was even related and that it is completely genetic. Then tried to tell me how to work with my kid. He knew all of this because he used to drive his ex-wife and step son to their therapy. It made me so mad that I have not talked with him since. I get stuff like this all of the time. I wish people would understand that I know my son better than anyone and I know what he has to go through. Annette

    ReplyDelete
  12. I'm fairly new to this (grandson diagnosed just one year ago) but feel like I know quite a bit now from our personal experience and the fact that I read EVERYTHING I can about autism. I was shocked when chatting with a psychiatrist friend. I told her my grandson was making good strides, and now speaking. She said, having never met him, "Well, you know he has Aspergers." No, I replied, it's ASD, but not Aspergers. And she replied, "But people with autism don't speak. It's Aspergers." I was aghast that a professional, a child psychiatrist, had no idea about the spectrum, or that you can be verbal with autism without it being an Aspergers diagnosis. There was no convincing her. I am astounded. If a psychiatrist doesn't know this basic information, how little does the general population know??

    ReplyDelete
  13. Harlan Ellison said that “You are not entitled to your opinion. You are entitled to your informed opinion. No one is entitled to be ignorant.” Unfortunately we all think we know more than we actually know and feel a compulsion to babble our distorted knowledge. Let me know when I do this!

    ReplyDelete
  14. Oh my goodness! Ha! That was so silly. Glad you vented.

    ReplyDelete