Thursday, March 7, 2019

It Feels Like I've Come Full Circle

Some of you who have been with me since the beginning of Reason to Hope (as Guatemala Grandma) might remember that my first plan was to come to Guatemala and provide communication systems for children in Hermano Pedro Hospital.  Looking back, that showed my naiveté not only about Guatemalan systems but about institutional living.  I soon discovered that providing a way for non-verbal children to communicate when no one was listening was more than ineffective, it was frustrating and cruel to the child.

(Side note:  I believe much has changed at Hermano Pedro since I began there 8+ years ago.  I also still maintain they are by far the best institution I have been in, and that includes those located in the US.  Institutions, by their nature, are rigid.)

So, over the years I would periodically get to work with communication systems at a wheelchair distribution, and at times at New Life School in Santa Maria, but it really took a back seat to other parts of our ministry.


Last year, Andrew Lewis brought a communication devise to Fidel which had been donated by the Tobii-Dynavox company, for which he is a sales rep.  It was wonderful to see Fidel being more understandable to those who don't know him (Fidel speaks but because of Cerebral Palsy it is difficult and his articulation is poor).  Through Fidel, I have learned a lot about the challenges of using a communication devise, particularly in Guatemala, but still believe they are valuable.


My experience with communication systems has pretty much been with lo-tech systems using laminated cards and velcro strips.  Electronic devises are costly and fragile, and did not seem a realistic option for Guatemala.

Then, Mary Tieken who has worked with Mark Richard of Beeline Wheelchairs got the communication system bug.  Darly, a little girl connected with Mark, was bright and alert, but could not speak.  Mary was on a mission to help her find a way to communicate!


Early using her communication devise for the first time.

She contacted Tobii-Dyanvox and it just so happened that Justine Thole answered the phone.  Justine is not only a sales-rep for the company, but a licensed Speech Pathologist.  Furthermore, she is a Christ-follower.  Through Mary's call, Justine heard God call her to Guatemala, and she obeyed.  She immediately set out looking for used devises which could be donated for use in Guatemala and began making plans to accompany Mary's daughter, Carrie, on a trip to Guatemala in January.

Mary contacted me, though I only knew her through mutual friends.  She knew of my interest in alternative and augmentative communication, so invited me to join their team.



On January 5th when Carrie, Justine, and Theresa Schroeder arrived in Guatemala, they came bearing gifts.  In fact, they had a number of footlockers full of communication equipment, with various levels of sophistication.

We set off visiting children I knew who would benefit, as well as come kids which Beeline contacted.  The next week was spend in Xenaco, Santa Maria de Jesus, Santa Lucia, Antigua, San Antonio Aguas Calientes, and other towns visiting projects and children's homes where these devices might be helpful.   These ladies got to see parts of Guatemala not usually shown to tourists, and were gracious and resilient through it all.



We gave out everything from single switch communicators, where you hit a button for one message, to highly sophisticated equipment which children could control through eye-gaze (selecting items by where they looked).  It was exciting to see the possibilities become reality in many places.




I have always felt insecure doing communication, since speech therapy is not my field.  My justification for do it was I was more qualified that those who weren't doing anything!


Justine spent hours patiently training me and encouraging me in my ability to manage this project.  I discovered that much of what I had researched and figured out was, in fact, best practice, and when they left January 12, I was left with two footlockers still full of devices.

I have not devoted as much time to this project as I had hoped due to expanded responsibilities at New Life School until April.  Then, however, I hope to jump in with both feet and really hone my skills in this area.  Programming and changing some of the devises from English to Spanish are my greatest challenges, but Justine is just a Skype call away, and left me with a wealth of resources to help me get started.  Looking forward to seeing where this leads.

A side story too good not to tell:




At this same time I became acquainted with DIGNA, a program in Antigua that teaching job readiness skills to adults with special needs.  Unknown to me, the founder, Amanda Blackwell, is a Speech Pathologist working on her doctorate (focusing on assistive technology) who lives in Antigua.  God provides resources beyond what I could ask or imagine.






I also found out at this time that the daughter of the care-takers for my house, Rosario, is a Guatemalan speech therapist.  Though this project, I was able to connect her with Hope for Home ministries, who hired her to work with them on the spot.  And, I have a speech therapist living next door.  Who but God could arrange all this?

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