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Apr
07

Who's Afraid of AAC?

Who's Afraid of AAC? When someone says “AAC is not my thing,” what they're really sharing is that they are scared.

Somehow being an Augmentative and Alternative Communication (AAC) specialist with PATINS has put me in the position of listening to the confessions of school staff:

“I’m not good with technology.”

“They didn’t teach any of this when I was in school.”

“AAC is not my thing.”

It’s usually said in a hushed tone when they think no one else is listening.

“I have nothing but good news,” I’ll often say. “90% of what we’re talking about is just good instruction for all students that you already know, we’re just framing it in a new way to support non-speaking students. The rest I’ll put on a cheat sheet, and I find cheat sheets helpful too.”

But what I want to say is “AAC wasn’t my thing either and look at me now!” At one time, out of the things that SLPs had to learn, I would have ranked AAC dead last. Even below the paperwork.

I had “The AAC Class.” In one semester I was to learn everything I needed to know about AAC and I would be set for the rest of my career (haha!). However, there was one little snag: the professor who taught the AAC class took a sabbatical and another staff member was wrangled into covering it so we could graduate on time. This is what I learned that semester:

Nothing.

At least, nothing which was practical or helpful in the real world. I was given my first “real job” caseload with several non-speaking students, a binder for PECS, a Boardmaker CD, and released into the wilderness. My class notes were worthless.

I was in trouble and these students needed something I didn’t have: the knowledge of how to “do the AAC.”

Of course, AAC was definitely not my thing. But it had to be because there was no one else. I adopted a simple plan that has kept me afloat to this day: just keep saying “yes” to every opportunity. Every training and app I could find to practice with, every opportunity to attend or present at conferences and network. None of this came naturally or from a book or college course. Yes, I will pilot it. Yes, I will learn it. Yes, I can teach it. It was just years of chasing ideas and tools for students that made them light up inside when they found their voice. I made mistakes, forgave myself, and tried to learn and do better. Yes, yes, yes.

Exactly none of us started life as “technologically gifted” or imbued with the knowledge of AAC or any technique or educational principles. We all had to start at zero and learn.

When someone says “AAC is not my thing,” I think what they're really sharing is that they are scared.

They are scared of failing. They are embarrassed by the idea of not being enough for the task. They are traumatized and work-worn from so many evaluations and tasks, and worried that their work won’t be enough. 

And you know what every scared person wants?

A friend, a light in the darkness, and some tools.

At PATINS we have lots of those. Did you know that if you are an Indiana public PreK-12 staff member and one of our events on our training calendar isn’t at a time that works for you or your team, you can request it at another time? If you were hoping to talk about that topic but wanted 1:1 personalization or a deep dive into a special topic, we can set up that consultation at no cost to you or your district.

In particular, for those who are ready to say “yes” to trying out AAC tools and techniques, we have a process just for that. For a no-cost PATINS AAC Consultation, please fill out this referral for each student. This 2 minute video is a brief overview of our process.

The scariest thing that could happen is doing nothing.

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Dec
08

Reasons To Stay Strong, Collaborative, Positive, and Brave


Starfish award winner, Mandy Hall, with her husband, son, and daughter.
As educators, we are all quite aware of the many reasons it's challenging to keep pushing on, especially right now. Rather than spend even one more sentence reiterating those reasons, however, I want to emphasize the reasons it's so critical that we don't stop moving forward, that we find ways to re-kindle the fires that fuel and warm us, that we remember there are people who need us to do just that, and that we will likely also need someone else to do that for us at some point in our lives, as we are all inevitably Temporarily Abled

It's been a good while since I've had a guest blogger. In fact, it was August of 2019 when Beth Poss graced my blog with her wisdom on designing and decorating a classroom with more function than form! ...definitely, a read worth revisiting! I'm pretty picky when it comes to sharing my turn to blog with another writer. It was a pretty easy decision, however, when I learned about the most recent PATINS Starfish Award winner, Mandy Hall, M.S. CCC-SLP! All Indiana educators, administrators, related service staff, and all other school personnel are eligible for this award that is presented to the super heroes who consistently go above and beyond to meet the needs of all students through Universal Design for Learning, the implementation of Accessible Educational Materials and Assistive Technology, in order to be most meaningfully included in all aspects of their educational environment! Mandy Hall absolutely embodies all of this and while we wait in eager anticipation for her official Starfish Award video to be released on PATINS TV, she has most graciously agreed to guest-blog with me this week! Mandy has worked as a speech-language pathologist for sixteen years serving students ranging from preschool through high school as well as volunteering her time to support the communication needs of adults in her community.

"One busy evening at work (summer job) led an unexpected customer to me. Our eyes met and she immediately looked so familiar. It was Karen, Tony’s mom! I remembered her son from my own grade school when I was little! He was the young boy who carried around ‘that thing’ because he never spoke. I never knew the name of it, or got to use it with him, but I now know the importance of those things! Anyway, I remember not seeing him very much; he was always in the smaller room down the hall, with “that bald teacher.” I also now realize the extreme importance of inclusion!

Karen looked at me and said, “I heard you’re the girl I need to talk to!” Her son, Tony, is now thirty four (oh my gosh!) years old. Karen shared that he still lives with her, and that he is still unable to verbally communicate with his mouth. I shared with her that I am, indeed, a Speech-Language Pathologist (SLP) and that I love helping people learn to share their voice through Alternative and Augmentative Communication (AAC)! 

Working with learners who have intensive needs can be very tough, and sometimes you get to feeling like it’s never enough, or questioning how you will ever be able to make a difference. Progress can often be slow, but the (SLP) life is fast paced! It can be easy to lose your direction, your passion, your spark, and to feel like you’re drowning in frustration and piling tasks. There are some keys though, that I want to share, to keeping your drive strong, your passion thriving, and the outcomes with your learners trending upward! Mentorship, collaboration, the support of a partner, family, continuous learning and development, community resources, and celebrating the small wins each day.

Fast forward - I would finish my day at school and began visiting Tony every Wednesday evening to work with him using an AAC device. I will say that magic happens at their kitchen table on those evenings! Well, perhaps not magic, but many small wins that are celebrated with vigor! Tony and I share many moments of joy, filling my heart, his parents’ hearts; and Tony is communicating! I quickly realized that I was getting my ‘spark’ back through each of these small wins with and through the support of this family and them with my support! Oddly enough, sometimes it’s the finding of extra work like this, that can reignite the passion! This includes the sharing in joy from our littlest students, at 3 years of age, to adults at thirty four plus! First words, first moments of experiencing in learners that eagerness to communicate and a readiness to learn; the first time parents and caregivers are hearing and seeing their loved ones communicate their feelings, their wants, their preferences in life! 


Starfish award winner, Mandy Hall, with a student and parents
Reaching those milestones to be able to share in those particular joys with other people isn’t usually an easy task, that’s for sure. It takes an entire team, which can include SLPs, SLPAs, teachers, OTs,
parents, administration, support staff, and community partners! You just have to be
all in and open to utilizing them all!

For me, it all started with an amazing mentorship, with the incredibly skilled SLP, Cathy Samuels. I was an SLP Assistant for her. She showed me the ropes and I witnessed the powerful and moving changes she was able to initiate with kids. I wanted to be able to do that! I remember navigating through our first AAC user experience, which was uncharted waters at the time, and we felt like it was just too complicated for us. Paintbrush man, a bucket, a pot boiling? What are these pictures and how will kids ever figure this out? Well, they do. And they do it beautifully. We doubted initially, and they proved us wrong over and over. This may just have been the start of me embracing continual life-long learning, professional development, and not capping possibility!

84 cupcakes in a 7 by 12 grid, each with a paper decoration topper representing one of the 84 buttons of the LAMP Words for Life home page.

The tables have now turned. Me, Cathy's former SLPA, finished graduate school and became an SLP myself! In turn, I then find an irreplaceable SLPA to work alongside me; my own sister! Without my sister/SLPA, there is absolutely no way that I could do this job. She jumps right in with some of the most inspiring bravery I've every seen, to help with any and every group of learners, any level of need, and has also found a love of working with kids in their AAC journeys! Her shared passion, drive, and support of me, has allowed so many of the kids we work with, to be true communicators, which in turn, feeds my ‘spark’ even more! Find those people around you who support you and believe in the work that you do and utilize them!  

Starfish award winner, Mandy Hall, with her sister who is also her SLPA

Helping people, kids and adults, obtain their own communication device can certainly be challenging. Writing funding reports, fighting medicaid, writing appeals, attending appeals hearings with attorneys and parents; all to fight for a person who is unable to tell us their basic wants and needs. The frustration with that, easily reaches high levels and there are times when giving up seems like the only option, and sometimes it’s easy to forget about the resources that are available to you, but critically important to those people you're serving!

A family shared with me a foundation that is now, near and dear to my heart, and many of the families we serve here; Anna’s Celebration of Life. When devices have been denied funding for various reasons, this foundation has pulled through for us and graciously gifted communication devices so that our learners voices can finally be shared! One young girl’s short life on this Earth, is now changing the lives of so many others with exceptional needs in Indiana. Brad Haberman has built a phenomenal foundation that provides to so many children; including 4 of our own here!

The PATINS Project of Indiana has also helped in big ways! Learning of PATINS, a few years ago, I was able to acquire items from the Lending Library for 6-week loans, for free! I was reminded of all the wonderful things PATINS does this past Fall. I was able to attend their 2 day Access To Education conference, learning, listening, and taking in so much useful information! I’m not afraid to reach out, ask for help, and request devices for loan. How do we know what our kids can and cannot do unless we try as many possibilities as we can find? ...and how do we possibly do that without organizations and services like PATINS! That’s the beauty I have found through PATINS. Their support and understanding goes far beyond the loaning of a device or the provision of an accessible material. It’s the implementation support, the follow-up, the training, the feeling of someone holding my hand through the process if necessary, that makes all the difference! PATINS has allowed for some of my learners to figure out that an expensive speech generating device is just too heavy, and that the keyguard is better than a touchguide, and that headpoint access, while exhausting, can work! We learned through two loaner devices that one particular student needs a lighter, more accessible device with special features that cannot be accessed through an iPad, for example. That trial and error process simply wouldn’t be possible without PATINS!

Circling back to Tony, it’s tough to realize, after 34 years and multiple therapists and educators, Tony was only able to communicate with two people (his mom and his dad). I am going to do my best to make sure that Tony gets his forever voice; to keep and never have to return. Though you may not be able to reach them all right away, if you can change the life for even just one by recognizing, facilitating and encouraging communication, then that one will make you want to dig and reach even harder to find the next! Seek out mentorship and try to recognize it when it falls in your lap even if it might seem like a challenge to your current way of thinking! Share the accountability and the responsibility with your team, partner, family! Seek out and utilize the resources that already exist and are so eager to serve you, for free, like PATINS! My goal; to be able to make sure that all of my learners find and have their voices before they walk through their school’s door for the last time."

While Mandy is super-busy, I have no doubt she'll do whatever she can to support you in your own journey to support others! Please reach out to me if you'd like to be put in touch with our latest Starfish Award Winner, Mandy Hall! And... if you know someone who's also doing inspiring work to include all students meaningfully, please don't hesitate to nominate them for a PATINS Starfish Award of their own! You can also learn about the past 13 Starfish Award Winners!

For now, I'll leave you with an email I was sent back in April of 2018, from a Director of Special Education in Indiana. It's an email that I'll never forget and it absolutely reinforces the passion, dedication, and urgency that Mandy Hall represents. Thank goodness someone thought to borrow a speech-generating communication device from PATINS near the end of this 3rd grader's year, but... what about all the things he never got to share during the previous 8-9 years of his life... things that we'll never get to know. Stay passionate, stay eager, driven, fighting for those who need you right now, and using the resources around you! PATINS is here to support you!

On Apr 30, 2018, at 4:58pm,     Daniel - will you please forward this to whomever there at PATINS sends out the assistive technology for us to trial? We have a Dynavox on order to trial with a 3rd grade student of ours at                Elementary School (he is the one for which your staff has been assisting us with the AT evaluation). He passed away quite unexpectedly this past Saturday (April 28, 2018). We need to cancel that request to borrow the device.  Thanks so much -                  ,      Special Education Director

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Apr
30

What You See May Not Be What You Get

For this week's blog, I'm beyond delighted to share an incredible story of a student's communication journey to success experienced by my AEMing for Achievement grant team in Perry Township. I'd like to thank two members of the grant team, Callie Herrenbruck and Kelsey Norris, for their collaboration in sharing this story. Please enjoy!

I have this student. You most likely have one, too. This student is what I would call a communication conundrum. It’s not that this student doesn’t communicate, because he most certainly does, but when asked if unfamiliar individuals understand what he is attempting to communicate? Probably not.

Student from blog seated and smiling
This student most often communicates to express enjoyment, request preferred objects and actions, and refuse non-preferred activities and objects. He does not (YET) verbalize but will vocalize using a variety of pitches depending upon the context. He moves his body to convey his refusals and moves others to make his requests. This student’s laugh is one of the most infectious ones I’ve ever heard, but when he is upset he has significant self-injurious behaviors.

I, along with this student’s teachers, other therapists, and paraprofessionals were constantly attempting to find the “magic tool” for communication. This is where we have all thanked our lucky stars that our school district was one of the AEMing for Achievement Grant recipients, as being a part of the grant includes a communication package!

Members of our grant team and the teacher of record (TOR) met with Jessica Conrad for an in-depth problem-solving session. Several topics were discussed during the session including behavior(s), motivators, previous trials, and goals. The best part of the session was having someone from PATINS who is extremely knowledgeable about communication and communication tools, along with having access to a variety of resources, share their knowledge with the team.

Following the problem-solving session with Jessica and members of the grant team, this student’s TOR, and the rest of his team, put the suggestions to work. One of the suggestions was to use a mid-tech device (Logan ProxTalker). The device was borrowed from the PATINS Lending Library. Almost immediately, this student “picked up” use of the device to request desired objects and actions. He had NEVER done this with any other communication tool! Absolutely amazing! This student’s family then met with the team to learn more about the Logan ProxTalker-- how the student uses it at school, and what the next steps would be in obtaining his own device. Upon seeing this student use the device, they were blown away, to say the least! Watching their reaction to him using the device was one of the best moments in my career.

This student continues to appear to prefer using the Logan ProxTalker, as opposed to other communication tools to make requests. I will be honest and say that he does not love communicating with the device every day. He may even meander away when prompted to use it, but don’t we all have our days?

Student from blog seated in classroom pursing lips in disapproval
So, is what you see really what you get? ...not necessarily. If you didn’t know this student, you might see him putting cards on a machine and the machine talking. What you don’t see is the progress he’s made in being able to effectively communicate his wants and his likes/dislikes. You might not see him participating in joint attention with an adult regarding his interests, and you might not see the relief his parents show when this student demonstrates growth in his communication! Thanks again to PATINS for helping our team and this student to grow in his communication capacity. As the Starfish Story says, “It made a difference to this one!”

Written By: Kelsey Norris and Callie Herrenbruck, Perry Township Schools | Pictures used with parent permission
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Apr
01

SETTing Students up for Success and Counting Every Move for Communication


5 min read

Artist Name - SETT-Blog-Audio.m4a


Boardmaker symbol of frustrated young man with the printed word frustrated

I've been working with a student and his team. They have moved successfully albeit slowly through using the tools below. At some point a few years ago, this student was evaluated and deemed to be a candidate for a dedicated speech generating device (SGD) with eye gaze (very expensive but a key part of a communication system for the right person). His team (student, parents, teachers, SLP, OT, PT and support staff) was keen to make his SGD work for him. The student has cerebral palsy that reduced his limb movement/accuracy, so much time had already been invested AND after all, this solution was expensive.

Why change? This can be awkward. How do you bring up the topic of a significant change to access and trajectory of the student's goal/language programming? Two things; the eye gaze never really worked as well as expected AND the student became increasingly frustrated often abandoning the device. Eye gaze could be revisited but it was important to recognize that it was not working. Time to think about the S - Student, his M - Moves, his C - Clicks and his C - Chats. More about that later.

Head control/calibration were hurdles interfering with access. Using the tools mentioned below, this student demonstrated enough consistent and accurate improvement to control switches with his head and hand for scanning. His language setup was changed (Core Scanner on an Accent 1400) to work more efficiently with two switch scanning (i.e., he presses one switch to move through icons and the other switch to select his word).

He is reportedly thrilled with his new access method. He smiles more and enjoys communicating often producing spontaneous sentences.

excited preschool girl with open hands raised near her face looking at device screen

First of all, you must gather data. If you don't have data, it's just your opinion.  

I sometimes hear that students "inconsistently respond" to stimuli or questions, it "depends on how they are feeling", "if they're in the right mood", "they are being stubborn", etc. Maybe. Perhaps we have not presented motivating stimuli, observed the tiniest of responses,  offered the most appropriate access method, or given the student adequate wait time.

SETT is an acronym for Student, Environments, Tasks, and Tools created by Joy Zabala. It is a FREE resource. "Although the letters form a memorable word, they are not intended to imply an order, other than that the student, environments, and tasks should be fully explored before tools are considered or selected. Some people have tried to explore the first three separately and in order, however, that is nearly impossible because the first three are closely linked." The SETT Framework is so important, it's at heart of our process for the PATINS AAC Consultation Request form.

Another important tool to set the groundwork is the Every Move Counts, Clicks and Chats sensory based approach (EMC3). It is available to borrow from the PATINS Project Lending Library. EMC3 is a sensory-based communication program. It is based on the idea that everyone communicates in some way. The COUNTS Assessment explores sensory, communication, and symbols. The are seven sensory areas: vestibular, proprioceptive, tactile, visual, auditory, olfactory, and gustatory. The CLICKS Assessment looks for purposeful switch use. The CHATS Assessment is used to collect communication skills. It states that "Assessment results are seldom 'final'. Needs, abilities, and environmental demands change over time."

A third tool useful for SETTing students up for success is to establish a baseline for communication skills and determine goals. The Communication Matrix is an online/questionnaire tool for anyone in the early stages of communication. The first 5 assessments are FREE. Communication is more than just receptive and expressive, students also need methods to refuse, obtain items, socialize, and gather/share information. These functions of communication can be measure/quantified by using the Communication Matrix.

Hand in hand with these pieces is understanding the absolute need for flexibility, continuous learning, and ongoing assessment with students. It is a fluid process that can and should be revisited periodically as the student changes, technology changes or when things stop working as well as they had in the past.

SETT your students up for success. Use the SETT, EMC and Communication Matrix to better understand the student, environment, tasks/needs, sensory responses, access abilities AND communication skills. THEN consider the T - Tools to empower your students and goals for success. If the tools don't seem to be working, collect data and try something else!

If you would like to learn more, check the PATINS Project training calendar or reach out to a PATINS Project Specialist for more information.

The PATINS Project Tech Expo is fast approaching - Thursday, April 15, 2021. It's FREE. Get registered!

Additional resources:

SETTing Up Successful AAC Use - Lauren Kravetz Bonnet, PhD, CCC-SLP

The Dynamic AAC Goals Grid DAGG-2

Symbol Assessment

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Nov
28

This Blog Post is Full of Curse Words

This Blog Post is Full Of Curse Words Icon for various forms of AAC with the large black font reading
About once a month I have to answer a really important question:

“Why is that word on his talker?”

“That word,” is our euphemism for any number of words: body parts (slang and clinical), fart sounds, curse words, words that are culturally irrelevant, childish, or inappropriate for a child [of his age/place where he is/supposed cognitive level]. And someone, somewhere, decided to program it on this child’s Augmentative and Alternative Communication (AAC) device as if encouraging the child to use inappropriate language.

I get it. When I imagined the magical moment of helping a student find her voice with the fancy new Sound Generating Device, I wasn’t expecting her first two-word phrase on her device to be “poop butt” repeated over and over again for the next three days, either.

I get it, I really do! We’re professionals trying to create engaging and enriching environments for our learners and the literacy activity has been derailed because we taught him how to make plurals on his talker and now he loves pluralizing the word “as.”

We admit we’re impressed, but we can’t let that slide.

In moments of “enriched language” that flusters me I take a deep breath and remember:

I am not the language police.

A larger-than-anticipated part of my job has been talking about cuss words. And promoting cuss words. And explaining the functional importance of having access to cuss words. And listening to and programming cuss words into communication devices. And explaining why adults can't delete cuss words and "adult vocabulary" from a kid's voice. And listing all culturally relevant cuss words. And finding good visuals for cuss words.

If my professors could see me now.

So what happens if she talks out of turn, pressing the buttons on her communication app? The same thing that happens to all the other students talking out, of course.

What happens when she won’t stop saying “poop butt”? The same thing you would do for any other child who says it. We don’t duct tape kids mouths, and we don’t take talkers away.

What happens when she uses swear words in class? The same thing that you do for any other student who cusses in class. We can’t forcibly remove words from a speaking child’s vocabulary. We teach, we consider the variables, and we provide natural consequences. We don’t delete words from the communication device.

It is work worth doing, with clear expectations, communication between school and family (and sometimes with the office door closed and the volume down really low as you check to make sure “#$!@” is pronounced correctly). The communication device is a voice, not a school textbook or a representation of just the words you hope or anticipate they’ll use today. It’s their access to their human right to communicate, and sometimes communication is colorful, shocking, or uncomfortable.

Do you agree or disagree with me? Let me know in the comments below, with any language you like.*

*natural consequences apply

The icon AAC in my title image is from ARASAAC, a no-cost Creative Commons license resource for symbols and icons to represent all words (even “those words”).
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