Comprehending Denial.

Just because I parent a child with autism, does not mean I understand autism. I am constantly rewiring my own brain to understand what goes on with my child.  Just when I think I get it, I realize how foolish I am.  Things I don’t think my son will be able to handle, he breezes right through (the sound of the fire drill at school, for example).  Things I never considered would be difficult (listening to a story), are.  While there are some things I can predict his reaction to, I would say my understanding of him, at any given time, would be about 75 percent accurate.  It’s that other 25 percent that gets to me.

Over this past week, we spent a lot of time together because of Spring Break. There were a lot of trips in the car.  And I was forced to listen to the first 20 minutes of the movie, Cars 2 over and over.  He talked in the back of the car as we drove.  “There is the dump truck!” “There is Tokyo.”  “There are the elevators.”   “There is Finn McMissile.”

And after the 100th time of listening to him and hearing the movie, I finally realized something.  He is watching “moving pictures”.  He is not watching the movie.  What’s second nature to me is foreign to him. He watches television and movies He sees pictures and hears words.  He repeats the words and identifies the objects.  He doesn’t get the story.

The part of this that makes me super foolish is that I didn’t get his lack of understanding myself.  ABA is doing a couple of programs to try and work on comprehension of what he sees or hears.  I knew that.  I watched the tutors work those programs.  Often, he learns to memorize the answers and recite them back to get to the reward.  Instead of understanding that this is difficult for him to grasp, I was, in my head, blaming ABA for not “getting through” to him.  Yes, I can admit that but with the requisite degree of shame.

But now I’m comprehending that I looked right past something everyone else could see that I could not – the same way my son does not see the stories.  I was in denial.  I didn’t want to face that my son is not processing the words and pictures into concepts and stories.  If I faced it, I got scared.  Understanding stories and learning “morals” and “concepts” is the basic foundation upon which the whole structure of learning is based.  Without it, how will my son be able to function in society when I’m gone?

The idea that he may need a caregiver for life is looking way too far over an edge I don’t want to look at.  Who will take advantage of him?  Will he even know if someone is taking advantage?  Where will he end up?  Who will give a care about him, isolated and alone somewhere in a group home with someone making minimum wage who hates his or her job to watch over him?

Am I being melodramatic at the plight of a five-year old who doesn’t understand a story?  Maybe.  Perhaps it will fall into place later.  Or is that just more sugarcoated denial on my fear?  Put it off.  Leave it be.  He’ll get it someday in his own time.  You see, I don’t know that to be true.  He has a brain dysfunction.  I have no way of knowing how deeply it affects him or what he will get past.

He’s a beautiful boy.  He loves, trusts, expresses empathy, fear, hurt, laughter, pain, just like anyone else.  But his whole world is different.  What would it be like to be five years old and never comprehend a story on television, or that was read to you?  Never understand a single episode of Spongebob or Sesame Street that you ever watched?  Yes, he’s taking things away from these programs.  He finds his own enjoyment in television, in stories and movies.  He memorizes things that are concrete, solid and unchanging:  the alphabet, mathematical equations, character names, repetitive mantras that suit some purpose for him.  Even being able to read and spell are because the sound of a word with letters can be memorized.  Even a word’s meaning can be memorized.  But put those words together as a story, and poof, it disappears in a cloud of non-comprehension.  My son has joy, but the joy comes from flashes of video that capture his attention, certain words, colors, sounds.  Not the moral of the story, the emotions it evokes.  Those, I see now, are lost on him. 

For me to comprehend his lack of comprehension is an irony not lost on me.  It puts a whole new face on the echolalia, the repetitive watching of the same 20 minutes of Cars 2.   All of a sudden, his lack of pretend play, his disinterest in listening to long stories, to having a book read, to watching a movie make a whole lot more sense.  If he cannot absorb “stories”, why would he have an interest, much less, tell a story, orally or through pretend play?

He likes video games because he doesn’t need a story.  He can just get points and electronic praise in the form of a higher level.  He likes physical play on a play structure or slide -no story required.  He can tell me what he had for snack because it is something he can memorize and remember as a fact.  He cannot tell me what happened at school because that is a story.

In breaking through my own denial, I can get over it and try to help.  To help him by trying out different methods of bolstering comprehension.  To find a way.  I will reach him and make a difference to what he can achieve.  So, despite the fact that my kid can drive me crazy, even more so during a full Spring Break, this year’s Spring Break will be one I won’t forget.

During his time off school, I got a new education.  One that hope will help both of us comprehend at a whole new level.

Pondering in cheese...

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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26 Responses to Comprehending Denial.

  1. kcunning says:

    I’ve noticed this difference between Hannah and Jacob.

    At five, I’d ask Jacob to tell me about the cartoon he just watched. He’d pick some concrete detail and relate that to me. That was it. That was all that the cartoon was to him: the one slapstick bit, or funny expression. All the rest washed over him. It was like was in active scanning mode for fart jokes.

    If I ask Hannah what happened, she’ll give me a pretty good plot summary, especially if this is a cartoon she’s seen a few times.

    The bright side: at ten, Jake’s okay at summing up what happened in a story, and I’ve accepted that he may never write blurbs for TV Guide. I know I’ll have to work extra hard with him when he gets to more literary classes in high school (and at that point, I may move him to a private school, where I have more leeway to say ‘skip Shakespeare’).

    • solodialogue says:

      It is weird I must say, but I was hoping that you would respond to this one because I really wanted to hear how you deal with this issue with Jake. And yes! I had to laugh at the scanning for fart jokes! It is like that!

      I’m glad to hear he’s gotten better at comprehension. I know I shouldn’t compare because every child is different but we inevitably look for hope where we can find it. Thanks.

      (And I cannot even think about the classics yet! Yikes! )

  2. dixieredmond says:

    Karen – First a cyber-hug. I understand this. Every child reveals himself over time in his own way throughout his life. He will continue to learn and grow. And so will you.

    • solodialogue says:

      Thank you Dixie. I know you know and that is soothing. But, as you may have figured out, I’m kind of a pushy broad when it comes to my son so I’ll be working on facilitating his comprehension. 😉

  3. Mom2MissK says:

    I’m sending hugs too. As a writer, it was pretty devastating to discover that Little Miss doesn’t quite get the story thing. But this is something I have to believe is going to come with time and practice. No, she may never get the whole “big picture,” but we work with baby steps.

    You might want to try some of those puzzles with inferences. Mr. Tony often brings them for Little Miss. Basically, it’s three puzzle pieces that tell a little story. You put the story together by inferring what happens next. For example, 1. The dog is playing in the mud. 2. The dog gets dirty 3. The boy washes the dog. With only three pieces to look at, the exercise has a concrete beginning/middle/end – this makes the story closed-ended (as opposed to engaging in open-ended imaginative play) and it builds the repitoire of stories Little Miss has when she does want to play (or deal with a situation in real life).

    There’s also a new ipad app that I’m looking at that has some of this in it… I don’t know if you’re familiar with Buddy Bear, but we already bought the Wh-questions app and are looking at the second one. Definitely a review coming in the near future!

    • solodialogue says:

      Thanks for the hugs, my friend. The hugely embarrassing part of it all is that ABA has been working that beginning, middle, end of the story thing for quite some time but it never sunk into my head about the comprehension. Yeah. He’s actually supposed to start taking a group of 3-5 pictures and placing them in order and them telling the story but that is at a standstill. They lay the pictures out and he describes each but does not do it in story form. Only as a separate “thing” – each picture.

      I want to do more than lean on ABA. I will – of course- let you know what crazy, hair-brained, scheme I come up with next!

  4. Lisa says:

    I could have written this. Oh, how I could have written this…Tate also doesn’t comprehend a story. He likes a snippet, or a joke from a show, but he doesn’t know how to comprehend. This is something so absolutely foreign to me, especially with my love of literature and writing and so forth.

    Our ABA team also uses the same puzzle piece cards that MomtoMissK’s therapist uses. They help Tate sequence and comprehend BASIC stories. They are foundational building blocks…and have started helping a little. (I may need to check that app!)

    Like you, I am determined to help my son learn how to do something that is second nature to me. And where there is determination and hard work, there is hope! Hang in there…

    • solodialogue says:

      Thanks Lisa. There is something oddly comforting in knowing someone else is working on it too. It’s one thing to know ABA is working on it. It is something entirely different to know there are other parents struggling to find a way to open doors for his/her child.

  5. blogginglily says:

    I do not allow my children to play inside cheese.

    We’re attempting potty training again this week. I feel your pain.

    • solodialogue says:

      You just have not found such a magnificent cheese to play in!

      Potty training – ahhh, at least that’s one we kind of – well, sort of have down – during daylight hours, every other Tuesday, excluding holidays… 😉

  6. First, I am sorry. I can hear how much pain this is causing you. You are so right when you say that part of the issue is the not having any idea if/when this will improve.
    I am wondering if you have ever heard of Lindamood Bell? Parents with kids on the spectrum out here swear by it because it’s not about tutoring it’s about evaluating area of learning and retraining the brain to think. The ability to read without comprehending is common with our kids and they addressed it in a presentation I went to by them. I was really impressed. ultimately I have not pursued it yet because my son is young enough I’m not sure we know for sure yet what he can and can’t do- learning-wise and the program is beyond expensive. But, like I say, parents really swear by it for the issues you mention so I wanted to pass it on for your research. They also do train the trainer workshops which is probably what we would do since it is more affordable and just try to teach our son ourselves if we decide to go down this path.
    http://www.lindamoodbell.com/default.aspx
    p.s. just to be clear, I have no connection to this company, not trying to sell for them or anything, just wanted to share a possibility 🙂

    • solodialogue says:

      I did not think for a second that you were selling anything! I do appreciate the referral and will definitely check it out! If you hadn’t directed me, I’m pretty sure I would have gotten there by some kind of strange route! It is much better to hear from a kindred spirit that this may be a good tool. Thank you so much!

  7. Very touching, and again, very well written. I hope there will be advancements in the next years so parents will understand more, and find solutions for independent living. My heart goes out to you. The part about watching moving pictures, made a lot of sense.

    • solodialogue says:

      Thanks Sam. It took me so long to understand that phrase about seeing things in pictures. I finally get it. It has to be hard. I’ve already bought some basic materials to help work with him on comprehension. We will just keep on trying until we get something that makes sense.

  8. Woah, I think you opened my eyes/brain to something. I never thought of it this way. I think I got tricked because my Autie “pretend plays” with his brother but he’s probably just mimicking him. He def wont sit for a story. I think I’m gonna check out that link from Outrunning The Storm too.

    • solodialogue says:

      My son also “pretend plays” as prompted by ABA staff. It’s all scripted memorization. I can see that now. I don’t think memorization and mimicking is a bad thing. It’s a path somewhere. Sometimes, we all “go through the motions” without feeling/understanding. That comes later. It will come later. We just have to help it along if we can. 🙂

  9. Wow. Thanx for this, Karen! You just opened my eyes to what I, too, had not seen before. You nailed it, and perfectly so!!! Just wow. Will have to contemplate on this one. Will have to have Jess check with his teacher(s) at school to see if they are using the simple puzzle story method… or if even THEY “get” what is missing, what he needs.

    Geesh. Sure enough… I missed it, too. Might have had a vague inkling but unable to put my finger on it, much less describe or verbalize it.

    Thank You !!!

  10. I know what you mean, my SensiGirl scored 13 out of 100 on the Naglieri non-verbal ability test. It was so absurd I laughed. The kid has been reading since she was 2 or so. She has cracked her iPad restrictions code and changed the language on her iPad to Spanish twice. I was despairing because she couldn’t answer the “wh” questions too. She has made progress and it really is showing now that she answers “wh” questions about her drawings. The other day told me she ripped her pants at school. I didn’t expect that from her. Not every kid progresses at the same rate, but they all make progress. She couldn’t do the sequencing until someone showed her the sequence first, then she only needed one try. Now she is seeing how they tell the story.

  11. Kelly Hafer says:

    Another great post – although, I can’t recall a bad one from you. 🙂

    Ted is the exact same way. The idea of a moral, theme, plot…oh, Lord. We are so far away from that.

    It’s very easy for me to extrapolate how “limited” Ted’s life might be when I think of all these things that he can’t do (yet?). I, too, worry about what happens when I die. I realize how wrong it is, but I hope Alex will step up and take over when I’m gone. Really selfish of me, but that’s my plan right now. Alex, as you might understand, at sixteen, is not really digging that plan. Let me know when you puzzle it out, please. My brain hurts. 🙂

    • solodialogue says:

      Thanks Kelly! What a nice thing to say.

      At 16, who would contemplate that far ahead? I know Alex loves those boys like crazy and she will always have their backs. We had an ABA meeting about the whole comprehension issue, and the plan is to have the tutors tell some oral stories using a “felt board” and letting Tootles place the objects in the appropriate spot to what he is hearing orally from the tutor. (For example – the red snake is in his cage.. T puts a “red” snake in a cage” “Along comes Fred, his brown doggie friend…” Etc…) Luckily, instead of buying a felt board, I found through Lori’s website (see comments for Lori above) I found there is an iPad app for Felt Boards that I will be downloading for the program. They are also thinking of a program called “main idea”. I got a couple of workbooks for reading comprehension and did one page with T last night on sequencing making an ice cream cone. He loved it (although he did not get the sequencing correct) so hopefully we’ll make some progress. The book is here for anyone interested – http://www.carsondellosa.com/cd2/Products/CarsonDellosa/PID-1568229127.aspx?CM_VC=Reading

  12. eof737 says:

    We are all learning as parents… You’re not alone.

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