It’s Her World. We Just Live In It.

Sometimes I look at Vista and there’s this sense of awe and amazement that this little child is mine.

But as each day passes, she’s less ‘mine’ and more her own person.

Sometimes I have to remind myself to step back and remember that the way she reacts to things isn’t necessarily going to be the same way I react to things.

She has her own way of doing things.  And is definite about how her world is structured.

As time goes on, we realize more and more, that she’s not fitting into our world but molding us into what she needs her world to be.

And that’s not without it’s challenges sometimes.

One of our biggest frustrations has been around asking her to do simple things.  Every day tasks.  Using words she knows. And yet there seems to be no comprehension.

We assumed it was her three year old self being, well, a three year old.  Defiant.  Willful.  All the things a child that age can tend towards.

Until we did one of a speech and language assessment with her a few weeks ago.

Her verbal scores came back as expected.   She’s progressing wonderfully in her talking and ability to communicate.

Her receptive scores, those that indicate her ability to take in and process what we’re saying, were a surprise.

Despite the fact she knows the words, the meaning doesn’t always translate when you speak with her.

So when we we’re frustrated over her seeming lack of comprehension, it’s because… yeah… she really doesn’t understand.

Complete *headdesk* moment.

A neuropathway issue.  Apparently it’s not all together uncommon in kids with her types of brain malformations.

But now we know.  And that means we can start focusing on trying to rewire those pathways.  Because a childs brain is an amazing, changing, thing.

She may not understand us, but we’re slowly learning to understand her better.  And changing the way we do things to help her be who we know she can be.

We’ve started adding back in some signing, to see if visual cues help with the comprehension.  But beyond that, we don’t have a lot to go on.

So I’m turning to my brilliant blogging / twitter friends.

Suggestions on what you would do?  What you’ve seen work? What you think we could try?

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10 Responses to It’s Her World. We Just Live In It.

  • Michelle P. says:

    I’d go with visual cues, and written lists. Cause she’s pre-reading, they may be picture lists, but it should help. It also has the added advantage of not coming from you as the parent, so especially if there’s tension, you can just refer back to “what does the list say next”. We’ve got morning lists, night lists, and after school lists. Used them alot at the beginning, but now that routine is more establish, we only refer to them when he’s going wacko. I’ve heard of picture lists for simple chores (how to wash hands), pictures on bins to indicate what toys go where. You may even put together some standard pictures and “sketch” out your day. Come back to it when activities change if she’s having problems with transitions.

    Jenn Reply:

    @Michelle P.,

    Oh that’s brilliant! Thank you!!
    I never thought of doing it with pictures. I’ll definitely try that.

    Colleen Reply:


    I was going to suggest flashcards but I love the lists idea!

    nic @mybottlesup Reply:

    @Colleen, i was going to second the flashcard idea… especially since V is so electronic savvy, i’m sure you know of all the flashcard apps on phones. but again, i second colleen as i too love the list idea.

  • drlori71 says:

    I wish I had some ideas to help. My boys had severe expressive speech delay but no problems with receptive speech I’m not sure what is done for that. I agree with Michelle about pictures. We used pictures (PACS) a lot with son #1. He was in a special education preschool and the school had pictures everywhere.
    I certainly don’t know exactly what you’re going through, but I understand the frustrations involved with a speech delayed child. I hope you find some answers that help V.

  • Heather says:

    There are apps for the iTouch that are for receptive language. One is called receptive identification1. it shows the kids pictures and asks them to identify…it’s really fun. There’s another one called preschool tap-animals time, that does the same thing.

  • Lu says:

    I was going to suggest more lists/flash cards with visual clues. Also to search for apps. I don’t know any particular ones, but I do know there is and app for everything,
    I admire you and Bil so much for how you roll with the punches and continue to learn and fight and live for Vista. You guys are amazing Jenn. I hope you find something that works. xo

  • Michelle P. says:

    As my day progresses, and I’m also remembering that we do a lot of checking (cause I keep doing it). I’ll say something and ask “what was your understanding of that?” or “What are you going to do first?” or something similar. As Vista becomes more verbal you may want to do that too.

  • punkinmama says:

    I wish I had ideas for something that might help. But glad to see others do.

    Also very glad that you finally know *why* she wasn’t reacting to what you were saying. It’s a load off to know there’s a reason behind it. And she’s lucky to have you as her mom – someone who’s so willing to help her through it!

  • Kellee says:

    I’m afraid I don’t have any brilliant words of wisdom. I can say, though, that I’m very glad they’ve identified this for her, so that you can find the best ways to help her. *hug*

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