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I write from time to time about my daughter Ellie.  She's twelve and autistic, and a pretty amazing kid.

She has a website:

EllieCastellanos.com

where I showcase her many artistic endeavors.

Today I wanted to write about communication.  Always a thorny issue for autistic kids.  And adults!

Ellie’s first words were ABCs and 123s.  She started counting and reciting the alphabet right around the time she was supposed to be “talking”.  It was right around the time the doctor starts to ask you, “Does she use any words?”  This is considered screening for autism and other developmental delays.

“Sure,” I answered.  “She’s using words.”  I mean, the alphabet is 26 words, right?  Count to twenty and that 20 more words!  That’s 46 words!

What they should have been asking me, of course, is “Is she communicating?”

It’s a common misconception that autistic kids don’t speak.  Most of them speak plenty.  What they don’t do is communicate.  In fact, I’ve always been confused by the term “non-verbal”, which you hear bandied about frequently in the autism community.  I personally have never met a fully non-verbal autistic person.  They usually recite lines from their favorite shows, or sing songs, or sometimes just shout out nonsensical things.  Ellie used to shout, “It’s a purple party!”

But compare these to Nikos’ first word (Hi) and Lilia’s first word (wanna – oh boy that one is fraught with connotations but I’m not going there) and you can see that my other children were using words to communicate and Ellie was not.

At about age 4 we started to hear “yes” and “no”.  That was exciting.  That meant that she was trying to tell us her needs and desires.  Previous to that we were just guessing and/or offering her random stuff to see what she wanted.  The problem was that she didn’t entirely understand the meaning of “yes” and “no” and got confused a lot.  This let to a lot of confusion on our part, as you can well imagine.  But it was a step in the right direction.

Next came the firm use of “yes” and “no”, which was glorious.  It meant we could ask her virtually anything, as long as it was a yes/no question.  We couldn’t ask her, “What do you want for dinner?” but we could ask her, “Do you want stir fry for dinner?” and she would answer with her trademark honesty.  Autistic people can not tell a lie; perhaps that was George Washington’s problem, I’m not going to speculate on that.

The drawback to this system of communication is that we were constantly guessing what she wanted or didn’t want.  If you didn’t present her with the correct option, she couldn’t say “yes” to it.  So if she had an intense craving for beef stroganoff for dinner and I wasn’t offering her that option we would all get frustrated.

The most difficult issues were figuring out what was upsetting her, usually when we were out and about.  The things which upset Ellie are not always observable to other humans.  It could be a boy across the playground drumming his fingers on a slide.  It could be a kid’s high pitched humming out in the hallway at school.  Using yes/no questions in those situations is almost impossible, but you could follow her cues.  Blocking her ears, drumming her fingers in an angry way, these were clues as to what was going on.  It’s a form of communication, just not a spoken one.

That led us to the wonderous use of words.  “Stop singing” is a big one in her repertoire.  Sometimes I sing deliberately just to get her to talk to me.  She’ll tell us what she wants for dinner now with her own words.  “Chicken, rice and broccoli” is her favorite.

Still, her communication was very immediate and concrete.  What’s bothering her.  What she wants at that precise moment.  There was no future or past for Ellie.   I asked her questions about how her day went or what she did in school or where she wanted to go tomorrow because I knew one day she would start speaking about the past and the future.

The future came first.  It’s easier because you can pull out a calendar and say, “Friday we’re going to the ballet.  Do you want to go to the ballet?”

“Yes.”

Another good one is, “Do you want to go to the pool?”

“No.”

“Do you want to go later?

“Yes.”

“When to you want to go?”

“30 minutes.”

She really means it.  If you find her in 30 minutes, and tell her it’s time to get on her swimsuit,  she will happily oblige you.

Forward to the past–the past is much trickier.  It’s a harder concept, and verbally it’s more complicated as well.  She’s starting to get it.

She had a field day at school last week.  When she got home, I asked her, “Ellie, what did you do at field day?”

She looked at me for a long while.  I could see the gears right behind her eyes grinding away.  She was working so hard to work out what I meant, and how to communicate to me what she had done earlier in the day.

Finally, she said “bat”.  She looked very pleased with herself.

“You played with a bat?” I asked her.

“Yes,” she said.

Never has a small word like bat held so much significance.

Originally posted to coquiero on Tue May 14, 2013 at 07:32 AM PDT.

Also republished by KosAbility, Parenting on the Autism Spectrum, and Community Spotlight.

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Comment Preferences

  •  son is an acolyte at church (8+ / 0-)

    i told him to stand behind the altar for a certain greeting he says.

    he stood the farthest-back he could without falling down the step.  

    coquiero, is your daughter an only child?

    i think i have some new aspects of sibling issues on my hands.  

    Ted Kennedy: “The work goes on, the cause endures, the hope still lives, and the dream shall never die…”

    by jlms qkw on Tue May 14, 2013 at 07:59:01 AM PDT

  •  My son was largely echolic (19+ / 0-)

    when he was younger (he's 17 almost 18 now and come a long way). If you didn't watch the movies he watched you usually had no clue what he was trying to communicate. If you did sometimes it was confusing but you could usually figure it out. He also learned to count and recite his abc's early. He also learned to spell his name (though he would say "Say R, Say O," etc. because that's how I taught HIM to say it.)

    It still wasn't until he was around 15 when we realized why he didn't like some stores. He was doing a socialization/behavioral work book designed for autistic teens. One of the exercises was drawing things that made you angry. He drew a bank of florescent lights. He's not sure WHY they make him angry, other than the flickering and humming drives him nuts, which then makes him annoyed with everything and everyone. But at least he recognizes the problem. Now when we go to stores or anyplace else with a lot of florescent lights he wears sunglasses and earplugs if we're going to be there more than 20 minutes or so.

    Have you tried communication through drawing and pictures with your daughter?

    "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

    by FloridaSNMOM on Tue May 14, 2013 at 08:29:16 AM PDT

    •  That's a great idea (12+ / 0-)

      But art is so personal for her that I think she sees it as intrusive to make her communicate through drawing.

      We've tried so many ways of commuication, and she always just looks at us like, "If I wanted to communicate with you, I would."

      I blog about my daughter with autism at her website

      by coquiero on Tue May 14, 2013 at 08:39:22 AM PDT

      [ Parent ]

    •  ME, TOO (8+ / 0-)

      I enhanced my reputation for weirdness at work by stacking three huge empty cardboard boxes on my desk, right next to my keyboard.  If I stacked them just right, and pulled the top one out so it looked like it was about to fall on me, they would intersect the line of sight between me and the massive flourescent light above me, and cast a glorious shade across my work area.

      I had begged the maintenance guy to PLEASE not replace those lights, but he does.   I can FEEL them on my skin.  They HURT.   And, when I block them, the relief on my eyes in instantaneous.   It's one of situations where you didn't realize you were in pain, until the pain was suddenly gone.    I can feel the instant relief when I get them off me.   They bother my daughter, too.  

      Finally, I found this inexpensive cool bed canopy from IKEA shaped like large green leaf that works great to shade my desk.

      I really think they need to study the effect of those lights on people.  We might have a lead on why people go postal.

      My daughter, with fibro, also needs sunglasses and earplugs in certain situations, and my other daughter is very disturbed by little noises, like chewing or the clacking of a keyboard.

  •  Thank you for sharing with those of us who have (14+ / 0-)

    no knowledge or experience in this area. It's proving hard to explain, but I think diaries like this open up my mind a little more.

  •  I wish more people would realize that there's (11+ / 0-)

    a lot going on inside children with autism.  Here's one story, featured on ABC recently, that has turned out beautifully right because of the parents' dedication to their child:

    Autistic Girl Learns To Communicate Using Computers

    Conservatism is a function of age - Rousseau
    I've been 19 longer'n you've been alive - me

    by watercarrier4diogenes on Tue May 14, 2013 at 09:42:15 AM PDT

    •  Meant to add this when I first posted the above: (7+ / 0-)

      When they say she learned to communicate thru computers, that doesn't begin to describe how well she communicates.  I dare anyone who's watched this clip to look at an autistic child ever again and not think "I wonder what s/he's thinking".  What 'Carly' was thinking will astound you and bring tears to your eyes.

      Conservatism is a function of age - Rousseau
      I've been 19 longer'n you've been alive - me

      by watercarrier4diogenes on Tue May 14, 2013 at 06:58:07 PM PDT

      [ Parent ]

    •  This story was incredible (2+ / 0-)
      Recommended by:
      second alto, coquiero

      I cried.  It reminded me so much of Helen Keller.   Everyone was so worried that she was retarded, that SHE was not understanding THEIR message, and it turned out she had been taking in everything like a sponge, and the problem was that THEY were not getting HER message.

    •  I have mixed feeling about videos like this (0+ / 0-)

      it's wonderful what happened there, and they are a lucky family.

      But it wasn't just her parents dedication that made that happen.  That was a part of it, and a part they should be very proud of.  But the fact is they hit the lottery, and only one in a very few will achieve what happened in the video, no matter how dedicated the parents are.

      My daughter, who is more verbal than Carly, uses a computer all the time.  She also uses it to type, but even when she's trying her hardest, her syntax is garbled.  She usually types out stories rather than meaningful words.

      Please note, as well, that Carly's results were achieved using round the clock teams of therapists.  This isn't a realistic choice for the vast majority of parents.

      Mostly, inspiring videos like this just serve to make me feel secret guilt and shame.  Maybe I'm not doing enough.  Maybe we're making the wrong choices.  

      So it's a lovely video, unless you don't have a Carly.  While I am truly delighted for that family, in reality we continue to have our unique mixture of struggles and successes with Ellie, and that's all that is meaningful to me.

      I blog about my daughter with autism at her website

      by coquiero on Thu May 16, 2013 at 11:29:28 AM PDT

      [ Parent ]

  •  My godson... (16+ / 0-)

    is also autistic.  

    The summer he was 3 1/2 he learned how to say "goddammit" and when...instead of randomly swearing, he'd use it when he was mad about something. Like a broken pair of sunglasses. ("Broke. Goddammit.") His mom and I tried not to laugh....until the evening I was visiting for moral support (he has a younger sister)....as our 3rd hurricane of the season was barreling down on us. GS was in the living room where we were watching the news, and when the reporter said "it's time to hunker down," we heard GS sigh and say "hunkerin' down, goddammit!" Correct verb tense and everything....

  •  My daughter's on a different part of the spectrum (9+ / 0-)

    (Aspie) and she was actually very precocious in speaking and reading, and she now has a big vocabulary and scores high on language tests. But 90% of the time she's talking about one topic (her latest obsession), and it can be pretty hard to redirect her. Plus she's handicapped in other ways that frequently aren't obvious, and are masked a bit by how bright and verbal she appears. We all have a mental model of what capabilities most people have, and we tend to assume that there's a general level of intelligence people have, and that allows us to predict what they can do and not do. But for people on the spectrum that is skewed .. they can very capable in some areas and surprisingly less capable in others.

    •  I'm a school psych (2+ / 0-)
      Recommended by:
      coquiero, Slightly Wobbly

      and part of my job is helping people understand some of a child's capabilities based on my testing. As you say, it's easy to under- or over-estimate a person's ability in a given area based on how they present.

      I recently tested one very bright 18 year old with a great vocabulary who has no idea what nonliteral language, like "she had a card up her sleeve" or "she was in the dark" means. When speaking to her you naturally fall into a more sophisticated way of communicating because of her obvious intelligence, without realizing you've lost her. She is also a vegan who won't speak up if someone serves her a steak. Lots of peaks and valleys in her profile of strengths of weaknesses. It's a shame she was not identified sooner so we could have helped her.

  •  I am a speech-language pathologist (6+ / 0-)

    and enjoyed your diary very much.

    While I agree that the term "nonverbal" can be confusing and refer to different things, I would like to point out that a certain number of children with ASD's do not use speech at all, not even scripts.  Most have at least some rudimentary nonverbal communication, such as looking at desired items or reaching arms up to be picked up.  I have worked with a number of children who have not used any words of any kind even at quite late ages.  Some have gone on to eventually use words, sometimes scripts they memorize being most likely.  But some never speak.  

    Those that are completely nonvocal are often suspected of having a severe childhood apraxia of speech.  Children without autism can also have apraxia and are often very silent children, lacking in oral play such as babbling and baby "raspberries" in some cases.  

    In the earlier days of diagnosing ASD's, mostly the more severely involved kids were identified, with a larger percentage of these falling into the 'no oral speech' category, so it was featured more prominently as a feature of ASD's.  Now that more children are identified as being on the spectrum the percentage that have no oral speech is smaller, but still quite a substantial problem for many.  

    It is important for people to understand that communication takes many forms and with individuals with ASD's it is vital to determine the ways they communicate either verbally or nonverbally and then try to build bridges and ladders to more appropriate/conventional communication from where they are.  

  •  Beautifully written diary. Brings back memories (5+ / 0-)

    of my daughter's use of language when she was younger.  At 20 years old, her communication skills are still developing.  She's beginning to see the benefits of social communication.

    I've always felt like a detective, piecing clues together, making inferences and deductions from behaviors and facial expressions to figure out what my daughter wanted, needed and was attempting to communicate.  I still do it.

    At some point, you may be able to move from asking yes/no questions to giving her a choice between two or three different answers.  To obtain some conversation from my daughter, I ask her to tell me 3 things about her day.  When she gives me the 1st answer, I ask subsequent questions to get more information and language from her.  When I feel like I get as much info from her as I'm going to get from that question, I say, "that's one".  I then move on to the next question and repeat, until we get to three.  She goes along with me because she knows I'll leave her alone after we reach 3.

    Over the years, I didn't think she'd progress with her communication skills.  She continues to surprise and amaze me.

    Thanks for writing this parenting series.

    You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do. ~ Eleanor Roosevelt

    by Foundmyvoice on Wed May 15, 2013 at 06:11:52 AM PDT

  •  My son didn't speak till he was almost 8 (2+ / 0-)
    Recommended by:
    second alto, coquiero

    He's twenty now and doing things I thought would never happen.  Like, take the train into a work site where he volunteers with the local CHAMPIONSHIP hockey team (yeah they won!)

    When I hear the term "autism expert" I generally run away as fast as I can.  People don't know squat about any of this.  But I do know to never give up.  Never quit.

    I've never tried to "make my son normal".  

    We've tried to focus on the abilities and fight like hell to give him the tools and skills to not only survive but succeed in life as an autistic citizen.

    :)

    "Love One Another" ~ George Harrison

    by Damnit Janet on Wed May 15, 2013 at 07:50:54 AM PDT

  •  Good article, with one comment (4+ / 0-)
    Recommended by:
    second alto, coquiero, milton333, Lisa

    You state that people on the spectrum "can not tell a lie," which has not been my experience. My daughter is autistic and didn't start speaking at all until she was about 3; of course now at 9 it's a challenge to get a word in edgewise. However, she does know how to provide a response that is at odds with her own understanding of reality, which sounds a lot like a lie to me. Frequently it's sufficient to just ask "Are you sure?" to get her to reconsider her response, but I don't think we should attribute special skills to people with autism when they can be just like other kids in many ways.

    Good luck - all parenting is a challenge, and parenting a kid on the spectrum is that much more of one.

    •  I should know better than to make blanket (0+ / 0-)

      statements.  I may have exaggerated a little for comic effect.

      I do find, however, that most autistic people are refreshingly honest.  Sometimes it doesn't work out so well for them, and they have to learn to tell white lies here and there.

      My girl doesn't lie, though.  She doesn't care enough about what you think to lie to you.

      I blog about my daughter with autism at her website

      by coquiero on Wed May 15, 2013 at 11:54:50 AM PDT

      [ Parent ]

  •  I use the term "functionally non-verbal" (3+ / 0-)
    Recommended by:
    coquiero, milton333, Sandy on Signal

    to describe my son's verbal abilities.  The moments when he clearly communicates in distinct verbal constructs have been few and far between.  But he knows how to communicate his wants and needs most of the time.

    At nearly 14 years old, my boy still wears pullups.  I despair, sometimes, whether he will ever be functional enough to have any independence at all.  But I see incremental progress.  Perhaps, by the time he is 21, he will have a functional age of 8-10 years old.  Here's hoping.

    I suppose the hardest thing is the implication I get from some folks that I just haven't done enough for him.  As if low-functioning autism can just be worked away.  Other children are held up to me as examples of what can be accomplished.  Of course, when I dive deeper, it is rare to find a case where the child in question ever presented the challenges that my boy does.

    My recent heart attack has certainly given me pause to reflect on what may be possible.  My parents are too old, his mom does not (yet) have the emotional makeup, her parents are too selfish and our siblings are similarly unequipped.  It's a difficult situation.

    It is at times like this that I rely on faith.  I don't expect anyone else to accept that for themselves, but it is a real boon to me.  I have to be optimistic; the alternative is unacceptable.

    Ancora Impara--Michelangelo

    by aravir on Wed May 15, 2013 at 10:57:34 AM PDT

    •  aravir (2+ / 0-)
      Recommended by:
      Sandy on Signal, aravir

      I'm so sorry to hear about your heart attack.  How scary and hard that must have been for you and your boy.  I hope you are feeling better and on the road to full recovery.

      When I think about my daughter's future I wonder if starting a co-op living situation could be a possibility, where the families are involved but the residents are "independent".  If something like that could be set up before we move on to that great pasture in the sky, then it wouldn't be such a burden on relatives, but would still allow them to be involved.

      I think about that a lot.

      I blog about my daughter with autism at her website

      by coquiero on Wed May 15, 2013 at 11:30:56 AM PDT

      [ Parent ]

    •  I can't believe someone (3+ / 0-)
      Recommended by:
      Sandy on Signal, coquiero, aravir

      would imply that his progress is somehow under your complete control and that you haven't tried hard enough. That is so hurtful. My experience with parents of special needs kids is that they are constantly looking for ways to way help them. They also often carry a burden of unnecessary guilt -- I guess all parents do to some extent, but theirs seems greater. I am always pleased when someone wants to talk about this terrible weight in the hopes that I can relieve a bit of it.

      •  It happened yesterday again (1+ / 0-)
        Recommended by:
        coquiero

        as I was waiting for the train (after I posted my comment).  The person talked about a kid who was all better by the time he was seven.  Now, this was a stranger, and I know that his intention was positive.  But it wears on you after a while.

         I do wonder, sometimes, when I'm feeling overly sorry for myself, if some of this comes from my being male.  I have run up against the unconscious prejudice, from time to time, that men are generally clueless when it comes to parenting.  Sometimes, it's even an advantage.  Like the time my son hit his head on a statue while focused on something on the ground, and a dozen mothers surrounded me offering bandaids and wipes.  Other times, not so mulch.  LIke the time his teacher in pre-school called Social Services and claimed I was neglecting my son.

        Ancora Impara--Michelangelo

        by aravir on Thu May 16, 2013 at 04:45:33 AM PDT

        [ Parent ]

    •  Aravir, (2+ / 0-)
      Recommended by:
      coquiero, aravir

      You are a great father.  Please don't despair over potty training.  Potty training won't happen until the child has awareness of the need to go.  Your son doesn't have that; yet, and there are plenty of other kids just like him.

      A couple of years ago, we had a parents support group for autism.  The #1 session people wanted help with was toilet training for those over 9 years old.  It was the biggest group we ever had.  There was a family who had 4 boys all with high functioning aspies from 9-16.  The mom was at wits end, she was home schooling and had all kinds of difficulties because she was over worked and stressed.

      I'm a strong believer in school and routine.  Schools have schedules which is so important with autism.  It also helps with toilet training.  

      Our son is almost 16 and still wets the bed.  We've gone through so many mattresses.  Usually a child only has one bed until from toddler to teens, but not our son.  We're on the 5th mattress and will probably have to get another one soon.

      Hang in there, aravir.  Please see if there is a parent group around town that isn't made up of fruit cakes and anti-vax crowd.  Autism Speaks might be able to help.  Also, you can bring your child with you, just so folks get a good  idea of your situation.

      War is God's way of teaching Americans geography.- Ambrose Bierce

      by Sandy on Signal on Wed May 15, 2013 at 03:12:44 PM PDT

      [ Parent ]

      •  Sandy (1+ / 0-)
        Recommended by:
        aravir

        do mattress protectors not work for you?  I know as they get older wetting the bed means a lot more liquid than when they're little, but we've found a mattress protector has pretty much saved us.

        Also, we use a product called Urine Gone!, which is an enzyme product that seems like it should be a scam, but it actually works like a miracle.  It doesn't work if you've tried soap first, though.

        You just sop up all the urine first, then spray on the product liberally.  Let it air dry, and there will be no smell, no stain.  It's a life saver.

        I blog about my daughter with autism at her website

        by coquiero on Wed May 15, 2013 at 04:51:44 PM PDT

        [ Parent ]

        •  Unfortunately (2+ / 0-)
          Recommended by:
          coquiero, aravir

          the mattress protectors work for a short time but they get ripped up and also urine soaked, eventually, they get pretty gross too.  I do use them.  Washed it this morning along with everything else.

          Havent heard of Urine Gone.  Will go look it up.  Thanks.

          War is God's way of teaching Americans geography.- Ambrose Bierce

          by Sandy on Signal on Wed May 15, 2013 at 05:09:04 PM PDT

          [ Parent ]

      •  I have had trouble hooking up with support (1+ / 0-)
        Recommended by:
        coquiero

        Don't own a car, and the local groups are predominately female, in my experience.  Fortunately, I do have a strong support system related to wraparound, with an aide 4 days a week and a TSS in school full-time and at home a couple of days a week.  And his mom, although she is not capable of being a full-time caregiver, has started to step up, especially since my heart incident.

        But it is a goal, eventually, to get more peer support.  

        And I do have hopes that he will be potty trained when he's ready.

        Ancora Impara--Michelangelo

        by aravir on Thu May 16, 2013 at 04:50:06 AM PDT

        [ Parent ]

  •  Our son is non-verbal (1+ / 0-)
    Recommended by:
    coquiero

    he is almost 16.  He has apraxia and aphasia, even with both diagnoses insurance doesn't want to cover.  

    Three years ago, we changed speech therapists.  OUr new speech pathologist sent us to a trainer at the gym to get our son to use his diaphragm more.  He also has speech therapy, ABA therapy and therapeutic riding in order to bring about speech.  Recently, he has started to use his voice in" uh-huh" with a nod for yes.  "Uh-ooh" is thank you.  These are huge milestones.

    He is non-verbal and goes to a special school for severe autism and intellectual disabilities.  I'd say 90% of the kids there are non-verbal.  It is a challenge, but there are a host of people who work with this type of autism: psychologists, doctors, speech pathologists, occupational therapists, behaviorists and physical therapists are all at this school.

    By the way, I heard 1/3 of non-verbal autism has had a seizure, including our own son.  If you go to autism conferences, many times the Epilepsy society is there, too.  There seems to be a connection with seizures and severe autism.

    War is God's way of teaching Americans geography.- Ambrose Bierce

    by Sandy on Signal on Wed May 15, 2013 at 02:56:53 PM PDT

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