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I blog about my daughter with autism, about her life, about her art, about funny stuff she does, about good times and bad.

I thought I might start sharing some of my entries here, as an effort to raise autism awareness.  Often diaries on this site about autism seem to center around vaccine issues, which is a shame, if you ask me.

This latest entry is about increased independence in my autistic "Tweener".

Visit her website to read more about Ellie, autism, or to see some of her artwork.

www.EllieCastellanos.com

Our girl is growing up.  She is not a baby anymore, she is not even a little girl anymore.  April 10th will mark Ellie's 10th birthday, and with her advanced age comes an increased awareness of the world around her and a desire to explore this world.

There have been a few scary (brief and scary) moments where she's asked to go outside to enjoy the beautiful weather and we look away for a moment to gaze at the long awaited-for blue sky, and she's gone.  I know she can't have gone far, she didn't have the time, but as I'm searching for her, calmly and with confidence at first, then more sweaty and panic-y, I realize the moments are ticking by and if I'm going in the wrong direction she could be going farther from me twice as fast.  It is not a fun experience.

Part of it is a learning experience for all of us, as I explained to Nikos who was watching her one of these times and was very sad and worried that he had lost Ellie.  We get to see what is interesting to her and where she might be on those times that we can't locate her temporarily.

The first time, I found her two doors down, at a neighbor's house that has a hammock swing in the front yard, and several full size hammocks hung out front as well.  She was having a grand time swinging.  I brought her home and scolded her gently.  "Ellie, you need to stay in our yard.  STAY IN OUR YARD.  Ok?"

No response.

The next time, we found her in another neighbor's yard, this time in back.  It was like she was doing a sweep of the area, searching for interesting and fun goodies she could play with.  I delivered another lecture that I didn't really believe she would absorb.

This leads up to our conversation yesterday. This conversation took place upon her request to go outside.

I'm going to try to transcribe it.

Me:  Ellie, if you are going outside, you have to stay in our yard.  OUR YARD.  Ok?

Ellie: **Looks bored**

Me:  Ellie, are you going to stay in our yard?

Ellie: YES

Me:  Good, Ellie!  (Knowing she was just saying yes because it was an answer)  Will you go into the neighbor's yard?  Will you go to the hammocks?

Ellie:  (Eye contact) YES

Me:  No, Ellie, no go to the hammocks.  You need to stay in our yard.  OUR YARD.  Ellie, will you go to the hammocks?

Ellie:  (Looking at me as if to say, "Of course I'm going to the hammocks, you idiot!  That's where it's fun!")  YES. HAMMOCKS, YES.

Me:  (Laughing, because I know how silly this conversation is)  NO, ELLIE.  No hammocks!  Our yard!  Stay in our yard!  Ellie will you go to the hammocks?

Ellie   (Speaking and looking at me to gage my reaction at the same time)  Nnnnnn (she sees in my eyes I approve) nnnnooooooo!  No!  (Looks triumphant, like she has calculated pi)

Me:  Yay!  Yay, Ellie!  No going to the hammocks!  Ellie, will you stay in our yard?

Ellie: (Bored again) NO.

Me:  Ellie!  (At this she smiles; we're playing again)  Stay in the yard!  Will you stay in our yard?

Ellie:  (More reaction gaging)  Yyyyyyyyeee (she can see I approve) eeeessss!  YES!

Me:  Ellie, will you go to the hammocks?

Ellie: Nnnnnoooo.  NO

Me:  Ellie, will you stay in our yard?

Ellie:  Yyyyyyeeeesssss.

End of conversation.  Ellie goes outside to play, and I go outside with her, to monitor her movements closely, because I know she will not stay in our yard and she will go to the hammocks.

To all you therapists and ABA people out there who are reading this and pulling out your hair at my poor behavior modification techniques.  I say, "poo-poo".  I'm doing the best I can.

Originally posted to coquiero on Thu Apr 01, 2010 at 11:51 AM PDT.

Also republished by KosAbility.

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Comment Preferences

  •  I Am Sure You Are Told All The Time (4+ / 0-)

    what you should and shouldn't do with your child. I am not one of those folks. I just love this sentence or two you wrote:

    We get to see what is interesting to her and where she might be on those times that we can't locate her temporarily.

    "In a time of universal deceit, telling the truth is a revolutionary act." - George Orwell

    by webranding on Thu Apr 01, 2010 at 11:59:25 AM PDT

  •  We hear you (8+ / 0-)

    our son doesn't speak but can nod yes and no, plus sign for stop means no to him, too.  It is constant supervision because he has no fear or understanding of limits.  Right now, we are at the beach.  He and my husband are the only ones in the water because it is very cold, but that doesn't matter to him, he loves the water.   Getting him out of the water is always a struggle, but at least he is enjoying his day today.  

    •  I have such a love/hate relationship (5+ / 0-)

      with the beach!  Ellie loves it, too, but the potential for danger left me with anxiety attacks all the time.

      Plus, there was the time that she and I were caught in a rip-tide and had to be rescued.

      That was the last time we went to the beach.  I'm booking a lake house for our vacation this summer...

      I blog about my daughter with autism at her website

      by coquiero on Thu Apr 01, 2010 at 12:05:48 PM PDT

      [ Parent ]

      •  Oh my, how frigtening (3+ / 0-)
        Recommended by:
        elmo, Fabian, coquiero

        we worry about things like riptides, jelly fish and plus how far he loves to go out in the water.  My husband has to go out with him to keep him from swimming to the Bahamas.  

        One of these days, we will have to stay away from the beach because he is 12, strong and strong willed.  At night, we have the hurricane shudders closed and we have a chair in front of the main door just so he doesn't walk out in the middle of the night.   Pool is an option; however, a lake house sounds appealing to us, too.

        •  Hee, you just reminded me (4+ / 0-)

          of the time when we were at a hotel with my daughter when she was quite young. It was one of those apartment style hotels with doors opening directly to the outside. I had locked and latched the security bolt on the door, believing that my daughter was still too short to reach it. Then I went into the bathroom.

          I heard the hotel door open. I called out to my husband, thinking he was returning. No answer. I realized it must be my daughter who had opened the door.

          I ran out into the room, pants half mast, toilet paper streaming, and ran outside.... nearly falling over my daughter. She was standing there just outside the door, laughing at me.

          •  Now that's funny n/t (4+ / 0-)

            I blog about my daughter with autism at her website

            by coquiero on Thu Apr 01, 2010 at 01:52:35 PM PDT

            [ Parent ]

            •  I can laugh about it now (4+ / 0-)

              but it was a terrifying couple of moments.

              I can also remember paying the bill at a restaurant once while holding my daughter in a scissors lock with my legs, because if I let go of her hand (which I had to do to sign the check), I would have lost her down the aisle. Boy, did I get some funny looks from other patrons!

              I can also remember buying a father's day president for my husband while pushing my daughter around in a stroller nonstop. I couldn't stop to look at anything because she was only content to stay in the stroller as long as it was moving. So I pushed the stroller around and around a display, then around and around the checkout counter...got some funny looks that day, too.

              Life is so so so so so so much easeir now that she's grown. We have other issues, of course, just not these ones.

    •  I recommend flotation vests (6+ / 0-)

      for kids who don't know when enough is enough.

      (skip the scary story) My son now swims willingly with his flotation vest on.  He will swim past tired and into exhausted.  Someday he will have the judgment needed to be able to swim unaided, but he doesn't have it yet.

      (Flotation vests are not Type 1 life vests and should not be confused with them.)

      Show me the POLICY!

      by Fabian on Thu Apr 01, 2010 at 12:39:42 PM PDT

      [ Parent ]

  •  Every day I do thing that would make our BCBA's (8+ / 0-)

    head explode (that's board certified behavior analyst for those lucky enough not to know) in the holy name of getting through the day.
    For instance, my son (verbal) is currently in love with numbers.  Deeply in love with them.  He's 5, and he want to add random numbers, count by 8s or whatever, measure everything in sight with a tape measure, memorize phone numbers/make calls, etc. etc.  Is this a deep and budding interest in the wide world of math?  No, he's not really adding, just memorizing that this plus that equals something else.  I believe the phrase is 'repetitive and restricted interests'.  Clearly, this is not the age appropriate endeavor we should be engaging our child in but when I'm trying to make dinner/talk to my husband/etc. I will absolutely hand the child a tape measure and let him go at it.
    He loves it, it's not hurting anyone and we don't let him do it all day.  So there.

    •  This says it all, as far as I'm concerned (6+ / 0-)

      So there.

      It's so defiant.  "Yeah, I just let my kid answer me with a single word and not a complete sentence.  What are you gonna do about it?"  :)

      I blog about my daughter with autism at her website

      by coquiero on Thu Apr 01, 2010 at 12:14:33 PM PDT

      [ Parent ]

    •  I'm With You On The Tape Measure (6+ / 0-)

      and I don't have a child. I got no experience there (although I wish I did). Along with a tape measure I'd be handing the child books of numbers.

      "In a time of universal deceit, telling the truth is a revolutionary act." - George Orwell

      by webranding on Thu Apr 01, 2010 at 12:19:24 PM PDT

      [ Parent ]

    •  I wonder how many BCBas (5+ / 0-)

      would actually follow their own advice scrupulously if they had autistic children of their own to live with around the clock.

      I'm sure it's changed (I hope so, anyway) but back when my daughter was little, so much of what the professionals recommended seemed downright cruel and completely insensitive to the child's viewpoint to the extent that they seemed not to recognize that an autistic child had a viewpoint. Mindblindness, indeed.

      •  TOTALLY agree, Elmo (5+ / 0-)

        40 hours of ABA for a 3 year old?  Seriously?

        "Oh, but we are the only method that is backed up by scientific research!" (Said in a smarmy accountant's voice)

        I went to battle with the behavioralists over potty training.  They were torturing her, and wouldn't budge when I told them we needed to find a different way.  "This is how we do it.  Harrumph."

        I told them to get lost, and did it myself.  One full year of potty training.  Eight months of failure for them, two months for me to finally get to success.  Maybe I was standing on the shoulders of giants, so to speak, but I think they were just barking up the wrong tree.

        How many more mixed metaphors can I fit into this comment?

        I blog about my daughter with autism at her website

        by coquiero on Thu Apr 01, 2010 at 12:38:55 PM PDT

        [ Parent ]

        •  Oh, potty training. (2+ / 0-)
          Recommended by:
          elmo, coquiero

          Did it twice.  It's not that they didn't understand everything - the how, wheres and whens.  It's just that it wasn't a priority for them.  That was the last piece of the puzzle - insisting that doing it right every time was a priority.

          That's the short version.  The long version was trying everything we (and every "expert") could think of to get elimination to coincide with sitting on the potty.

          I still practice mandated potty breaks because they may only realize they need to when the need is urgent.

          Show me the POLICY!

          by Fabian on Thu Apr 01, 2010 at 12:49:28 PM PDT

          [ Parent ]

        •  Heh (4+ / 0-)

          And they say autistic people are inflexible!

          "This is how we do it.  Harrumph."

        •  "Backed up by scientific research" gak, choke! (2+ / 0-)
          Recommended by:
          Sandy on Signal, coquiero

          Gak! (screech) The new buzzword here, re children in foster care, is "evidence-based" therapies

          There's this hideous training crap for traumatized children, which really is training for the parents, for parents who're from multi-generational dysfunctional parenting. But they assign it to normal parents with difficult children, because it's "evidence-based." All that means is that they did studies about it. Period. And they assign it regardless of whether you're making progress with the child or not. (!!)

          They have you wear a headset, and "play" with the child behind a 2-way mirror. They talk in your ear and tell you what to say. You're in trouble if you don't exactly parrot what they say. I thought I was going to lose my mind the first time I did it. They videotape this, then go over it to see what you did right, wrong.

          The last day, the "teacher", who was in training, who had her back to the video machine, said to me, "Well, if a person was in private practice, they could use a greater variety of modalities" - and gives me a huge wink. I swear! She was saying, essentially, that she thought aspects of it were ridiculous, but so she wasn't videoed doing it. Good grief.

          This health care system is a moral atrocity. Dr. Ralphdog

          by AllisonInSeattle on Thu Apr 01, 2010 at 02:13:13 PM PDT

          [ Parent ]

      •  Book "Children with Emerald Eyes". Have you (4+ / 0-)

        read it? The author works at school with children with huge issues, as, punching holes in walls, biting chunks out of people. Not sure what diagnoses were, she doesn't discuss. The similarity for me is that the children have big behavior issues.

        She's close with one little boy and his mom. At one point, the mom needs an operation, so they make arrangements for the author to keep the child at her home for 2 weeks. I don't remember the exact sentence, but she says it's the first time she ever understood what these parents were going through.

        This health care system is a moral atrocity. Dr. Ralphdog

        by AllisonInSeattle on Thu Apr 01, 2010 at 01:10:21 PM PDT

        [ Parent ]

      •  short answer: none of them. (3+ / 0-)

        Especially around bedtime.  

  •  Does the neighbir mind if she goes in their yard? (2+ / 0-)
    Recommended by:
    AllisonInSeattle, coquiero

    Some neighbors might not mind if she goes in their yard.

  •  Cellphones have GPS locators (5+ / 0-)

    The first thing I did when I gave my daughter hers was to turn that feature on...just in case. Of course, I have to make sure she's got her phone when we go out, and make sure it's turned on, but it gives me some measure of relief that if she should get lost, I can call her and/or locate her.

    She's not the kind to head off on her own, though, and I'm grateful for that.

  •  Sounds like she likes something in the other yard (5+ / 0-)

    Is there something in their yard that you can replicate?  Are there bright colors?  Comfortable place to sit?   But maybe the neighbor won;t mind if she sits there if the arrangement is worked out in advance.  If she's just lounging around there it isn't hurting anyone.  I have never minded my neighbors' kids being in my yard  or on my front steps as long as they didn't break my fence with their basketball.  There have been times when five or six children have been on my front steps and it was OK with me.

  •  Thanks for posting something of substance. (4+ / 0-)
    Recommended by:
    Sandy on Signal, elmo, Fabian, coquiero

    AFA the hammocks, the swinging (as you probably know) is attractive to her, and probably quite good for her brain.

    This health care system is a moral atrocity. Dr. Ralphdog

    by AllisonInSeattle on Thu Apr 01, 2010 at 12:55:13 PM PDT

    •  Yes indeed (5+ / 0-)

      She's calmer after she swings.  The one we just got (cheap, at Target!  A nice one, too!) is wide enough that she can wrap herself up in it.  She just loves it.

      At some point we want to get her the hammock swing, too, but she likes to smash into the tree, and she ends up really bruised.  Sending your kid into school with lots of bruises all the time can get you into trouble!!

      I blog about my daughter with autism at her website

      by coquiero on Thu Apr 01, 2010 at 01:01:24 PM PDT

      [ Parent ]

      •  Sometimes I have to just shake my head in (4+ / 0-)

        wonder.

        How can the school not know she's autistic? I will presume they must, it's not like you could keep it a secret.  And if they know, do they not expect bruises?

        When I had my foster son, he would lie. It's one of the things that foster kids from traumatized backgrounds do. Several main reasons for it: they've been raised by people who lie to them all the time ("I'll be back in a few minutes" -then it's hours or 2 days). And they've not been taken care of kindly, a type of fundamental lie in response to the hope we all have, that life will meet our needs. So truth/lie tends to have no meaning to them.

        One day his pre-school daycare director said to me, "We know you had a hard time with him this morning, that he did something wrong, he ran, and hit his head against the wall." I said, "Nope, this morning was very sweet, not a negative word for either of us."

        She looks at me like, "Well, you don't have to lie to me," and says, "Well, he told his teacher (repeat), it's OK, stuff happens." I said, "Really, this morning was fine (repeat)."

        I said, "You can look at the note I gave you this morning." Because I'd started giving them a note every morning detailing what he had for breakfast, and where his mood/behavior were.

        She repeated again, and I finally said, "Look, that did happen, I know the exact instance he's referring to. But it didn't happen this morning. Don't you know that much/most of what comes out of his mouth is lies?" I mean, these were supposedly "the professionals". And they don't know that attachment-disordered children lie constantly?

        I was thinking, For crap's sake, you have your day care teachers leave the room when his behavior has driven them to rage, I live with him full time, (daycare was 4 hours a day) I volunteered for this... and you can't even believe me over him? An adult whose affect is entirely congruent with telling the truth?

        Anyone in education who doesn't simply know that an autistic child is likely to be coated with bruises? I just have no words.

        This health care system is a moral atrocity. Dr. Ralphdog

        by AllisonInSeattle on Thu Apr 01, 2010 at 01:26:47 PM PDT

        [ Parent ]

      •  My kid's a swinger too. (4+ / 0-)

        He's notably uncoordinated but (motivation!) managed to teach himself to work a swing before most of his classmates.  Loves it.  And there's no ride too fast for him.
        Jumping works too--our OT a while ago recommended we get a little indoor trampoline and I think it does help him pull himself together now and then.

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