Skip to main content

Does She Talk?

The thing about the term "nonverbal" - it isn't always accurate.  Technically, it's a terrible label.   I always get a little, how should I say this, perturbed when someone calls Ivey 'nonverbal'.  You see, this terminology leads others to assume Ivey can’t communicate.  Oh, she communicates.  Quite well I might add.   My question is it Ivey who is limited because she doesn't speak verbal sentences, or is it the rest of us who are limited because we only pay attention to words spoken verbally?  And, nonverbal always makes me think more along the lines of mute, but if you have hung out with Ivey for any short period of time, she is anything but mute.  Remember there was a time when I could apply the humivent on her trach as an on/off switch.  This came in handy in church.  Well, that was until she figured out how to use her finger to cover the hole... years since  decannulation it's been game on.  Literally.  

The nonverbal box tends to underestimate her abilities.  It underestimates any clinically labeled nonverbal kiddo.  The real boxes should read:  "How does she communicate"  "Teach me."

In my opinion, it's the rest of us who haven't quite caught up to her.  As a good Southern woman I should say, "Bless your heart."  So 'clinically' we check the nonverbal box, but in reality, she is the most expressive and diverse communicator I know.

Why the soapbox you might ask.  Well, every so often we get to hang out in Scottish Rite when she is at her 'normal'.  Here is ole Scottish Rite they refer to her 'normal' as baseline.  Being here during these time, which are not often, is well with my soul.  Normally, they see her in medical mayhem which means she isn't very active or interactive, often lethargic.  Today, we, better yet, She is at baseline.  Me, I'm technically sleep deprived, caffeine deprived and noncompetitive to her ability to run on such few hours of sleep.  To me, She is superhuman.  But let's get back to communication.

I have sat through two shift changes, an EEG, a somewhat run of the mill seizure (which was entertaining, ask me about it sometime) and various medical staff.... they all are enamored by Ivey's communication.  Each person wanting to know a tidbit, how to say her name, how loud to speak, how to let Ivey know who they are, and the "What's she saying now".  For the staff, many who have been with her for years, this is a rare treat.  Have no doubt this go-round, she is game-on right up to throwing her legs over the bed rails...encouraging the nurse to lower the bed as low as it will possibly go ...... as the nurse said, "Encase she jumps out".  

I am reminded that 'clinical' terminology never describes my girl's capabilities. This applies to any arena requiring us to check boxes.  Can you imagine at every corner sitting through appointments or assessments where the only thing anyone wants to know about you can be checked on a box?  Now I say all this but for those who are in her medical world consistently or in her non-medical world consistently, you do know Ivey does not fit into many boxes.  As one nurse told me yesterday, "She is in a category all her own. She is so interesting."  Yes she is, nail on the head. 

Now that's all cleared up......

Don't let the lack of 'verbal words' or not being like the rest of us 'typical' people throw you. Ivey has a very clear and distinct language. The girl has no problem getting her point across.  She is a signer.  She is a vocalist. She is a body language.  A internal linguist.  Not in the traditional sense, no, it's Ivey's Language.

For example, Ivey has no problem telling you just how 'finished' she is with you.  Like just a moment ago, she adamantly told the respiratory therapist she was extremely 'FINISHED' with him - and he hadn't even started her breathing treatment.  She was busy and he was going to be in her way.  She signed "finished" very sassily. Then daintily took his hand in hers and tossed his hand away with a flick.  He didn't know whether to laugh or be offended.  Let's just say he was 'amused'.

So, yes, we are visiting Ivey's people in Scottish Rite here on the first floor.  Aka, the seizure floor for those with seizures.  We won this sweet stay after she threw out a seizure while in the waiting room at dental yesterday.

Beyond traditional communication, Ivey has a toolbox of ways to tell me things, including overall preteen attitude.  As of lately a very almost 13 attitude.  And to think I thought I might miss this phase.  

Like now, looking at her in the hospital bed.  She's let me know just how bored she is....  and she's let me know through more than one Ivey channel.  Ivey is Type A multi-tasker - and quite the demanding type.  Seriously, can you brush your teeth, play some music and eat all at the same time? That's what she is doing now.

On that note, and mainly back to the signing, Ivey needs people who know her communication language - she has so much to say right along with personality to say it. If YOU want to learn her language, please contact me.  I'm looking to enlist a few new Ivey communicators.  I just need to know you are interested.  She's not a traditional signer like you think when you think 'sign language'.  Come learn some Ivey Language with us. Again seriously, she needs more hands.  Frankly, she is demanding more hands.

So, no Ivey is definitely not nonverbal. Does she talk?  Yes. Do you need a few tricks up your sleeve to talk with her?  Yes.   Please let me know your interest and let's put some language in your Ivey toolbox.  I can teach you all you need to know - she will teach you the rest. 

One of our few moments of quite....songs about Ivey.




Comments

Popular posts from this blog

Teeth & A Port

Given that Ivey has a cleft palate that was pretty severe and extended far into her soft palate, even after repair, and years later, it has left her with some precarious cranial and teeth issues.  So here we are, back at Scottish Rite doing a little OR time to help alleviate some pain and address a few other odds and ends.  And after many years needing a port for immunoglobulin infusions, it has been officially removed.  Infusions have been replaced with Sub-Q infusions.  So away it goes.





The Animal Shelter

The final synopsis.  The dogs were loud.  She didn't even want to talk about the cats.  The snake.  That snake was her favorite.