My experience of Closing the Gap 2016 conference

I was notified by AssistiveWare on June 15th of this year that I had been chosen as the recipient for the Carol Villars Scholarship to attend Closing The Gap in October 2016 and I was extremely honored to have been chosen for this special scholarship.
 
Carol had warmly welcomed me to the Proloquo2Go Family Facebook page before I had even purchased Proloquo2Go for my adult daughter Nicole. She had answered many questions for me, shared in the joys of Nicole's accomplishments and also gave me support with the setbacks and occasional disappointments as my daughter began her AAC journey after so many years of being without an effective communication system. Carol was someone I had admired online and I was so sad for her family to hear of her passing.
 
To have been chosen from all the applicants, all just as deserving I, was humbling and I was determined to represent both Carol and AssistiveWare with honor.
 
Bonnie (right) with AssistiveWare's Support Team member Pam
 
Bonnie (right) with AssistiveWare's Support Team member Pam

Attending for my daughter

My daughter Nicole had left the school system after aging out at 23 years without an effective communication system. It reflects nothing but failure on the system and those professionals that denied her - and in fact said she wouldn't be able to use a dynamic AAC device with hundreds, thousands of words available to her - simply because she wouldn't (couldn't?) use a simple 4 or 9 button Go Talk. But if you wanted to talk about Taylor Swift and Christmas and your family and all the characters on all your TV shows, would you use a device that only gave you 4 or 9 words – all that someone else had chosen for you and that had nothing to do with what you really wanted to say?
 
After some success with Proloquo2Go over the previous 18 months, this past spring Nicole had a severe regression and depressive episode (very common with children and adults with her vary rare genetic diagnosis of Phelan-McDermid Syndrome) and hadn't been motivated to use Proloquo2Go in any effective way for 4-5 months. While I tried to keep modeling for her, the stresses of dealing with someone very emotionally unbalanced left me floundering and modeling eventually went on the back-burner. So even though by the end of summer Nicole had some stabilization and had reached for her talker several times, I really needed the motivation and support that I hoped I would find at CTG.
 
So my goals as I headed to the conference were:
  1. Connect with the best AAC professionals that know how to put the best practice guidelines into use and get input from them – especially on how I can re-motivate Nicole and myself.
  2. Since I had not moved Nicole up to Proloquo2Go version 4, discuss with the AssistiveWare team the best way I might be able to do this without discouraging Nicole from using her talker. And also which grid size and vocabulary would be best for her current situation with high anxiety, low energy and low motivation?
  3. What other AAC apps and devices were currently available? Speak with the developers and demonstrators to get the sense of how they compare to Proloquo2Go. Is there a better option than Proloquo2Go for Nicole?
  4. Investigate other AT (Assistive Technology). Now that Nicole is using a manual wheelchair part-time, what aids can assist her with that?

The conference sessions

My first session of the conference was presented by the founder of another AAC app called CoughDrop. I was interested in this app because it is cloud- based and device neutral. The concept of being able to make changes in Nicole's communication device on the computer vs having to have her device in my hands sounds very appealing. There are also lots of other features that are on CoughDrop but not Proloquo2Go but none that make it better an app for Nicole.
 
I attended several sessions presented by the Proloquo2Go team at AssistiveWare. At one I learned that the next major update in 2017 will add a search feature that so many have asked for with Proloquo2Go. While this isn't something that will make much of a difference in my modeling, I can certainly see how this will help the assistants and family members when they are with Nicole. Most of her caregivers will feel more comfortable in their attempts to model for her if they know they have a way to find the words they are looking for easily.
 
At another one of their other sessions, I learned the ins and outs of the new AssistiveWare Core Word Classroom. We learned how to personalize the planners, modeling guides, and 5 minute fillers and I realized how this tool will really help me help Nicole's assistants feel more comfortable with focusing on the core words during their time with Nicole.
 
One of the sessions I attended
 
The third session I attended presented by AssistiveWare was on using the Activity Templates in Proloquo2Go. Honestly, I thought I knew all there was with the templates but figured attending would strengthen what I already knew. But I was pleasantly surprised to learn several things I hadn't fully understood about the templates and know I will now be able to use them better.
 
Two other sessions I attended reinforced my understanding and commitment to start using more core words with my modeling with Nicole and how aided language stimulation (modeling) at all times, in all environments, really is the best tool I have to encourage and motivate her to use her communication device.

The exhibit hall

Between sessions and in the evening is when I scouted out the exhibit hall with the various vendors, suppliers, and developers of all types of AT. My biggest find was the different types of devices that could attach Nicole's communication device to her wheelchair while she is using it. ModularHose and REHAdapt are two systems that I will be discussing with Nicole's SLP and OT so we can evaluate which would work best for her. I also had an in-depth discussion with the representative from Cummings Mobility Conversion about the different types of conversion vans for wheelchair use.
 
I did visit all the booths of the various communication and apps that were represented at CTG. I listened to their presentations and learned the ways they were similar and different from Proloquo2Go. Most all of them do focus on core words and are customizable for the user – just like Proloquo2Go. All of the representatives were personable and listened intently to the concerns I am having with Nicole's device usage and answered all my questions honestly. And while they all felt their system was the best, ultimately none of them had any features that would assist Nicole with her communication usage better than what she already had with Proloquo2Go.
 
Which brings me to the AssistiveWare booth and the superstar team they had there. David Niemeijer, Jennifer Marden, Pam Harris, and Amanda Hartmann all welcomed me with open arms, gave me unfettered access, and treated me like the most important person at the conference. They listened to me talk about my issues with Nicole and her communication device use, let me play with the different iPads they had on display and examine all the different configurations, grid sizes, and vocabularies available, answered all my many questions, and gave me their best advice and support - and never once made me feel like I was imposing.

Forever grateful

After all the information I was able to learn through the conference sessions, the exhibits by the various AAC companies, and from my time with the smartest AAC people I have ever met, I now have a plan to move forward with Nicole and her communication device. We will stay with Proloquo2Go, not because they awarded me the scholarship or because they were so kind to me. But because it really is the best AAC app for Nicole's needs. I will be getting Nicole an eye exam and I will move her up to one of the full-size iPads since portability has become less of a priority and grid size, with maximum number of core words on the screen, is definitely the prime consideration now.
 
Since I have been home, my energy and enthusiasm with modeling for Nicole is very apparent. Attending CTG and connecting with the wonderful folks from AssistiveWare has been the shot in the arm I needed to keep pushing forward even when there have been difficulties and obstacles in the communication path I am walking with my daughter. I will be forever grateful for the opportunity to attend CTG, thankful to the whole AssistiveWare team (including those I only met via email - Anne Verhulp and Liesbeth Noorman), and hope that I represented and honored the memory of the woman that welcomed me to Proloquo2Go - Carol Villars.
 
~ Bonnie Micheli
Carol Villars Scholarship Recipient 2016
 

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