Getting Here From There

February 15, 2012 by - 2 Comments

Getting Here From There
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We wanted to take a breather from all the busyness to reflect on the year and to offer up some words of appreciation. For us, 2011 started with our version of a retreat: a long walk in the sun, a half day of venting our frustrations and a half day of planning new projects interspersed with lunch at the beach. (There might have been a bottle of wine in there somewhere, too.)

We’d both been feeling more than a bit discouraged that the quality of AAC services is still so spotty. There are some fantastic SLPs and teachers, of course, but not enough to go around. The ‘good ones’ are too busy. And the not-so-good ones were doing too much damage. It seemed to us that too many folks with significant communication challenges weren’t getting what they needed and that stressed us out to no end. Just when we had calmed down, we got yet another (!) call from a family with a 14 year old nonverbal kid who had never had any decent AAC. Really, people?! No one could have helped this kid in 14 years?!! Rant resumed.

We’d eventually settle down from that and then something else would happen. Maybe it was visiting a classroom or getting a referral from an SLP who doesn’t ‘do’ AAC because she wants to work on speech. Grrr! The stomach acid would start churning all over again.

You get the picture; It’s nothing new to most of you. Anyway, we needed to do some serious venting before the creative juices could neutralize the stomach acid. The walk helped us burn off the aggravation and the wine helped us regain our sense of perspective (well, sort of).

By the end of the day we had resolved to do things differently. And so began a set schedule of collaborative exploration, learning new technologies, some new vocabulary (in social media and visual literacy), and lots more. Glued to the computer at all hours of the night. Texting each other when we struck gold. Knowing that all this was eventually going to lead to something but without much of an idea of what that ‘something’ was going to be.

Two things inspired us. The first, of course, were all the children and adults who should have had more/better AAC and didn’t get it. The second was all the phenomenal people we’ve met along the way.

So before we go any further in this grand adventure of ours, we wanted to pause and say thanks.  There are a good many people we need to thank, but today we want to start with the families we’ve worked with. As you guys well know, a few half hours of speech-language therapy are insufficient. The real change comes from the families who take the information and use it PrAACtically.

And, so, families (you know who you are), thanks for leading us to this place. We thank you for your flexibility in thinking and learning, and in teaching us. We thank you for letting us collaborate with you and your son, daughter, spouse or sibling. Thank you for allowing them to educate many future SLP’s. And, of course, we thank you for your humor, kindness, and for being excited as we are about communication.

Thanks for taking evidence based AAC strategies and putting them into PrAACtice at a level higher than we could have imagined. Here are a few short quotes from you as best we remember them and from our perspective.
*names not used and some de-identifying changes have been made 

From the Moms (Sorry, but we mostly hear from Moms)
“I know you said to try and honor the symbolic request with the picture symbol but how many times a day do I have to go to McDonalds”?  [They had been there 5 times that day!!]

“I came from far way for this eval and expected you to have me buy a device. But without setting up a comprehensive visual support language learning program for the past 8 months, I would have never been able to TEACH the use of it”.

“I taught him to use adjectives in a full sentence so quickly-Amazing! I put him in the car, turned on the heater, and modeled one time- ‘make the car cooler’ and he got it! [Brave Mama to do this in the midst of a Florida summer!]

“Even though she just started elementary school, I knew middle school would come so fast. That’s why I set up lockers instead of bins in the playroom and taught the words on her device to go with the whole middle school locker experience.” [Wish I would have thought of that!]

“You told me to work on negotiation so my daughter can get more of things she really wanted (like her arguing 4 year old sister) – so I created this. Is it ok?” [Is it okay???? You ROCK, Mama!!]

“Thanks so much for letting him continue at therapy. He has been kicked out of so many places, but by giving him the opportunity to use communication supports to say  ‘I want to play alone’, he now doesn’t most of the time and he can communicate so many things.”

“I didn’t realize the ‘Wendy’s’ symbol was gone from his device. He kept telling me ‘windy’ from his weather page. I tried to really listen from his point of view and then I realized we just passed Wendy’s. It hit me how sophisticated his communication is becoming.” [You and me, both!]

“He stands by this bag with his toileting items at school to let them know he has to go to the bathroom. Can that be one of his object communication symbols?” [Great idea, Mom! By the way, can you come guest lecture in my class tonight?]


Just a few of the ways you passed it along:

“My [neurotypical] son said to me, ‘Mom, she is not being aggressive. She is just saying she REALLY needs to be alone, and bumping you is her only way. If she wanted to challenge you, there would be no talking now, because you would be hurt.’ And for a moment I was able to step back and see her multimodal communication attempts, even in the emotion of it all.” [Wait. Can your son come guest lecture, too?]

“You remember my husband, the one who thought this AAC stuff was not really going to work? Well, he’s been watching our son in communication therapy and now he’s pestering me when I forget to bring his AAC device/supports to the dinner table.”

So thanks for taking the myths and smashing them to smitherines. 

Thanks to you and your families for giving us the inspiration and energy to take on this new venture. It’s going to be a great PrAACtical year.

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This post was written by Carole Zangari

2 Comments

  • Ettina says:

    With the McDonald’s situation, I don’t think I’d have that much patience. After a couple visits, I’d say ‘I don’t want to go to McDonald’s anymore’ and start arguing with the kid a bit.

    • Carole Zangari says:

      To be honest, it would have been tough for me, too, Ettina! I’ve learned an awful lot from this mom over the years.

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