Monday, October 14, 2013

The Process- 31 for 21

I often hear parents mention how much work and practice goes into building meaningful communication with their children with Down syndrome.  I've heard again and again that it often requires significant purposeful practice to get to the point of regularly and effectively communicating desires, needs, or feelings, often even after a child has the building blocks to do so.

And it certainly is so with Cora.  But sometimes I wonder why it is such a process.

Take this morning for example.  Cora definitely has the language skills to tell me what she wants to eat.  She had finished most of her breakfast but still seemed hungry, so I asked her what she wanted to eat.

First she signed "fruit."  So I said, "Ok, fruit" and started to get her favorite fruit sauce.  She immediately starts shaking her head, saying "Uh uh! Uh uh! Uh uh!" and signing "no fruit."  

Then she says "pbpbpbpbpbmmmoooodeeeeee," which is her word for smoothie. When I reach for her smoothie she again tells me no.

Finally she signs "yogurt" so I ask her if she really wants yogurt.  She gives me her "yes"face with an enormous grin and then signs "yes." Of course she immediately launches into a drawn-out, smiley "no", but it's the one that she uses when playing.  

So yes, she really wanted yogurt.

So if she has the tools to tell me, why is it such a process?  It's like this so often.  She either doesn't respond, repeats my questions back to me through sign, or she uses her signs and words, but runs through a long list of options before finally clueing me in, like today.  It doesn't feel like a game and I don't feel like she's just indecisive.  Maybe she is simply practicing.

I know that she understands the words.  I know that she can communicate what she wants.  But sometimes drawing it out of her is painfully slow.  Where is the disconnect?  How much of it is the innate contrary nature of a two-year-old, and how much of it is part of the mysterious effect of her extra chromosome?

Either way, it doesn't change the fact that it doesn't come easily.  I see that she is learning and making progress, but all this patience is tiring me out.


  1. I'm no expert and I've never met Cora but this sounds to me like two year old behavior. Colin did this all the time!

  2. I agree with laura! Charlie is 2 and does this to me every day. "do you want an apple?" "apple!" give him an apple, shakes head, "no, no!" argh!

  3. Yeah, sounds like a 2 year old thing. :-) Samantha's sense of humor really started to show at about that age, once she started to realize the power she had over me by using her communication skills in that kind of way.

  4. Yup, my middle child did this stuff for the longest, but she doesn't have Ds. Oldest never did, but she doesn't have the urge to make hermama crazy like her little sister does. ;)

  5. For us with Abby it went beyond the typical 2 year old- but it's still based in the same process- the fact that she has things to say and difficulty getting them out and we don't know what she means. She has an apraxia diagnosis though so for her it's gone beyond just a delay in getting to the speaking stage that often comes with the Ds diagnosis. Apraxia is our beast- mostly because I see how frustrating it is to her when others don't know what she means inspite of how hard she works to make herself understood.


Thank you for sharing your thoughts with me!