Unwilling, Exhausted Advocate

I led a support group discussion on the topic of advocacy at the Help-A-Heart meeting earlier this month.  It has been on my mind a lot and has become a big part of my role as Kiran’s mom: to advocate for him.

This morning, we had a meeting before preschool with Kiran’s teacher, SLP, and AAC guy (Augmentative and Alternative Communication) to discuss classroom plan moving forward.  Since consistency is the main principle I choose to raise Kiran with, it remains very important we all are on as close to the same page as possible in how we approach learning this form of communication.

And the meeting went something like this – I share this because it is such a good example of how I process information and then advocate.

They expressed their thought process in how we should approach this.  Apparently, the words’ order on the pages is important.  The four words on the first page are the four most common vocabulary words in daily language.  They were strongly suggesting we focus on those four words – Like, Want, Not, and Go – and have them on a placemat in four quadrants for Kiran to touch.  They then said his mack button – the voice-communicator, when he pushes the button (which has the pic of the vocab word velcroed to it), it says the word, recorded in my voice – can be used more for interaction.  So, for instance, we can continue focusing on the word Turn while we read the book; he can push the button to participate in the reading process and let us know to turn the page.

I am taking it all in.  I ask a few questions.  Kiran’s dad asks a few questions.  He tries to bring up “More” being a word that has been used a lot, that Kiran is most familiar with.  I – still trying to process and think about how this is all going to work and how communication (especially with little kids) works in general – said something about how it doesn’t matter much if “More” or “Want” is used, because WE will understand what he is trying to say, regardless of the word being used, between the two.

But I am sitting there, processing it all.  I took in his point.  I listened to the experts in their respective fields.

I almost said nothing.  I almost just went along with it, no questions asked.  But it was nagging at me.  So, toward the very end of the meeting, I spoke up.

My question was this: Do we HAVE to focus on the first four words, especially given, for the last month, we have been focusing on these five words: Go, Stop, More, All Done, Turn.  And, agreeing with Kiran’s dad, More is a concept we have drilled in Kiran’s head for a long time.  If the research is there – and again, deferring to them as the experts in their areas – I wanted to ask that question.  Because we are the experts in Kiran.  And we know what concepts he may more easily understand.

And we want success.  Competency.  We want it to work with what KIRAN wants to communicate.

And I was heard.  And we essentially had a bit more discussion around it and decided to work on these four words on his placemat, in the four quadrants: Go, Stop, Like, and More.  And to work on Turn on his button, in an interactive setting.

I didn’t want to speak up.  Like I said, I almost didn’t.  I woke up not feeling well, I wasn’t really wanting to attend this meeting, my brain was a bit fuzzy, the whole damn thing just feels completely daunting and overwhelming even on a good day…. But I have learned to listen to my gut.  I have learned to process information more quickly in these settings.  I have learned to hear Kiran’s dad and process what he is trying to say.  I have learned to take all of it into account, play devil’s advocate with myself a bit, try to make sure I have issue (or don’t) with the recommendation…..and I have to speak up if I do.

I left that meeting feeling so incredibly blessed.  Kiran’s dad felt good about where I went with things and was appreciative I spoke up in the way I did.  His team members all seemed on board and okay with the compromise and focusing on the words that made most sense for Kiran.  His teacher continues to be absolutely fantastic, as she answered Kiran’s dad’s question, stating the other kids next year will learn the words this way as well, so Kiran and they can communicate in the classroom.  And they may even teach his most special friend in the classroom this year (but probably not the others, since the year is almost over).

I know advocating will not always be successful – or this easy – but today, I am thankful that I have learned to do it.  For Kiran.

 

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