Monday, November 7, 2016

Communication or Lack There Of

Will she ever have a conversation with me?  Will she be able to order off a menu at a restaurant?  Will she ever be able to tell me about her day?

These are the questions that circulate through my head on a regular basis.  A few days ago, I came across this blog post: loving a child who cannot speak and I really identified with it. You see, Ellie is predominantly nonverbal.  She has a handful of words that for the most part, only I understand and even then, it must be paired with a sign.  So I suppose you can say that I don’t understand her verbally, but I sometimes understand her signs.

Will she be able to tell me who her best friend is?  Will she be able to tell me if she is being teased, bullied?  Will she be able to contact someone in case of an emergency?

Ellie communicates via sign language and vocalizations.  Her signs are rudimentary meaning they are gross approximations of actual signs from American Sign Language.  In fact, some of them look nothing like the ASL sign at all.  She also makes up signs.  This leads to great frustration - both for Ellie and myself.  What does she want?  What does that sign mean?  She attempts to vocalize if she knows the sign.  If she doesn’t have a sign, there is no vocalization.

Baby, ball, mama (the most important word!), dada, horse, bus, cracker, bye bye - these are the words that she can say clearly.  The words that are understandable to most strangers.  Words that I am so proud she can verbalize.  Yet, these words will only get her so far in home.  With friends.  In the classroom.  In the world.  I worry.

Will she ever be able to say her own name?  Her address?  Phone number?  What if she gets lost?

It is my hope that with enough speech therapy, she will be able to communicate beyond one word sentences. That she will be able to be heard. Understood.  That she can communicate her personal needs and wants.  Yet sometimes, I find myself in despair.  Lowering my expectations, which is something that I am ashamed of.  Shoot for the stars.  She will surprise us. She will speak. Yet, I doubt and I don’t want to.  It isn’t fair to Ellie. I want to have those high expectations.  I don’t want to limit her.

Vantage Lite.  LAMP.  Proloquo.

The above are communication programs and apps.  Speech augmentative communication devices such as an iPad or a device specific for the production of speech can greatly help a person “speak”.  Communicate.  It has been recommended by Ellie’s teacher and speech therapists that she get a communication device.  The thought is that working on speech, using sign language, and augmenting with a communication device will help Ellie develop speech.  A total communication triad.  I am hopeful because even if she remains nonverbal, she will be able to converse, order food off a menu, state her name and contact information through this device.  The communication device will give her a voice.

Right now we are waiting.  We have applied to various places to get either the Vantage Lite device or an iPad with the LAMP app.  Of course, I hate waiting.  I want the device now!  I am ready for her to have a voice and I imagine Ellie is ready too.  It is time for me to erase those low expectations.  To raise them up.  For Ellie can and will do great things.

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1 comment:

  1. My best friend's son who has Down syndrome (he is 27) has trouble with communication. She used Proloquo, along with other tips and tricks using his iPhone to help him communicate with those who don't know him as well to get the context of what he was trying to say. Would you like her email to contact her?

    And, yes, Ellie can and will do great things. =)


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