Speak for Yourself

We have been writing this post for years in our heads. Every time we are asked to consult for a child who has already had an evaluation with a recommendation for an extremely limited mid tech device, we write it. Every time we go into a classroom for one child, and ask the speech- language pathologist (SLP) why a nonverbal child has no form of communication and are told that “he’s not ready yet,” we write it again. And every time we read something from a parent where, if a recommendation by a speech language pathologist is followed, it could potentially harm a child, it screams to be written again.

First, do no harm.

Let me start by saying this: speech language pathologists have a broad scope of practice. It is one of the best things about the field. If you want to work with premature infants in the NICU, become an expert in pediatric dysphagia. If you prefer geriatrics, then study motor speech disorders, aphasia, and learn how to read and/or perform video swallowing studies. If you want to work in Hollywood, learn everything you can about the voice and accents. The possibilities, diversity, and flexibility in the field allow SLPs to find their passion, and grow as their experience and careers develop. I can’t ever remember talking to a SLP who was not happy with her/his career choice. The ASHA convention is generally filled with over 10,000 pleasant, happy people looking for a way to do their jobs better.

Augmentative and Alternative Communication (AAC) falls within the SLP scope of practice.  It weaves throughout the lifespan from young children with genetic syndromes, cerebral palsy, or autism to young adults who are nonverbal as a result of a traumatic brain injury to older stroke or laryngeal cancer survivors. Our ability to communicate is essential to our quality of life. Take away someone’s ability to communicate, and they quickly fall into depression and unbearable isolation. Nursing home patients have refused to eat and refused tube feelings, preferring to starve themselves to death than to endure a life without communication. Children have been institutionalized because they are not able to communicate and their behaviors become extreme and unmanageable. There is a lot at stake when someone is nonverbal.

For all of our fellow SLPs who have been reading and nodding in agreement, for all of you who are reading Listservs, blogs, and journals and attending conventions and conferences to keep up with technology and best practice and merge them to find the most successful communication system for your clients – this post is not directed towards you. We hear from SLPs every day who are trying to give their clients access to communication so that they can reach their full potential.  You motivate us to try harder to meet more needs and brainstorm new ways to make AAC more successful.

Unfortunately, we also hear about SLPs who have done AAC evaluations and simply written that the student did not have the pre-requisite skills required to use a device, so they recommended….nothing.  We have also recently heard about AAC evaluators recommending old, limiting mid tech devices because a student “doesn’t have the fine motor abilities to use an iPad” or “already sees the iPad as an entertainment platform.”  We have seen these same children slide open their iPod or parent’s iPhone and search for their videos successfully….and isolate their index finger to pick their nose.  A child who is able to access an iPad, go in and out of apps, and scroll a list of videos to find the one she wants, should not he excluded from access to an iPad for communication.  She has already demonstrated the “pre-requisite” skills to access it.   We have said it many times, but it is all about motivation. (If someone has severe motor impairments that make them unable to move and access a touch screen, there are eye gaze device options or scanning. Scanning is available as an accessibility option with iOS 7.).  We know many students who have an iPad in an amplified case, locked in guided access for communication — making it a separate dedicated AAC device.  They have no problem distinguishing between that and their “fun iPad.”  (sigh)

First, do no harm.

One SLP/AAC evaluator recommended two separate high tech devices with COMPLETELY different, unrelated language systems, that were not even comparable, along with a mid tech option thrown in…we think he may have spun a wheel that morning before the child arrived for the evaluation.

We have recently had our third inquiry from a school district whose student had traveled a great distance to have a private AAC evaluation completed. The recommendations for all three were mid-tech devices, and two were identical…a  BIGmack for communication…yes I said BIGmack switch.

For those of you who are not familiar with this mid tech device, it is basically equivalent to the “That was easy” button that Staples sells. The only difference is that you can change the recording, but it is still only one message, and this costs $119.00.  None of the children have significant visual or motor impairments, and we feel the need to comment on this, since we feel it is wrong on so many levels.  Here are our reasons:

(1) Please give the child more credit than that. I am SURE he or she has the potential, ability and the desire to say more than one thing at a time.
(2) This is NOT teaching them any prerequisite skills except cause and effect.
(3)This can actually be detrimental since it teaches the much hated, and difficult to reverse, open hand “patting” skill instead of promoting finger isolation for direct access.
(4) The BIGmack switch does not allow for any spontaneous communication or novel utterance generation because the child  has no control over the message that is spoken when they hit the switch. It is going to say whatever the adult has programmed it to say. It will say, “You’re pretty, Mrs. Jones,” whether the child thinks that or not!
(5) The BIGmack switch costs $119.00, and you will never have spontaneous, generative language on aBIGmack switch.
(6) If you still feel that the child only has the potential to ever say one word, give them Speak For Yourself and close everything except the one word you think he/she needs — and then do them a favor and keep the “Babble” button open!!

Speak for Yourself with “eat” open as a single touch. Touching the “eat” button would immediately speak the word “eat.” Touching the “Babble” button would open all vocabulary for exploration.

When I was first assigned to an autism classroom, I was worried that I wouldn’t know how to help the four nonverbal students in the class. I told an administrator who said, “They already don’t talk, so you’re not going to make them any worse.”  I researched on my own and learned whatever I could about AAC, but what if I hadn’t? One of my students at that time was able to use his communication book to independently make requests, would elope to request a “walk” on a peer’s device, and bang his head against the wall of the cubicle when he wasn’t able to get his point across.  After fighting all year to have an AAC evaluation, the SLP who did the evaluation said that he didn’t understand the cause and effect required for communication.  The reality was that she used bubbles and bubbles alone to make that determination. He hated bubbles. He had to wait a year before the district would allow another evaluation…another year of frustration, another year of limiting icons with no voice output, and another year of banging our heads against the wall.   This was before the iPad (which now seems unbelievable!) and the only option I had was to gather my AAC-supporting research, document the student’s language knowledge, and wait. The following year, I met Renee when she came to do his AAC Re-evaluation, and he put three words together within the first half hour. He was more than ready…and he had been for years. He had to wait because he was just a request on the other evaluator’s schedule.  He didn’t fit into her bubble box and wasn’t patient enough to jump through her hoops.  There was no consideration for his interests, his dislikes, or his success. If you think it’s not harmful to be denied access to a comprehensive communication system for an extra year, try to spend a day nonverbal.

First, do no harm.

Some evaluators defend their recommendations by saying that they are recommending what the children are able to use that will meet their needs “at the present time.”  Our plea is to make a recommendation that will still meet their needs next week, next month, and hopefully for as long as they need it. How can we expect language development if a student has to continually learn a different system and in the case of the BIGmack switch, has no control over what he is saying?  The answer is very simple…the student is not able to develop language on a BIGmack switch. We can’t expect language development if we have put a system in place that guarantees the student’s failure. Is there any SLP or parent who is comfortable saying, “It is fine with me if this child does not develop language”?

When someone’s ability to communicate is dependent upon your knowledge, ignorance  does harm.  I sat at a workshop last spring and a local AAC evaluator was giving a presentation to parents and professionals, and said, “The student may only ever want to say 8 things so you don’t need all of those extra words.” On her sample display were 6 boxes with food requests and a button that said, “Please shut the door” (because the student got upset when the door was open). The other button was empty, “just in case there’s something else that he becomes interested in.” That is someone’s child. That is a child who deserves to be able to tell anyone that he is sick or hurt, that she enjoys weather and Dungeons and Dragons, or that he loves his parents. You don’t know people’s thoughts until they can tell you. You are not a mind reader, and neither am I.

First, do no harm.

We have clearly said that we love the field of speech-language pathology and we love fellow SLPs, for the most part. However, our passion for ensuring that nonverbal children are able to communicate is far stronger. With that being said, we are going to make the statement that we are becoming more and more convinced that informed, parent-driven AAC implementation is more effective than under-informed SLP-driven AAC implementation. If you’re an SLP who is feeling a little defensive, please re-read the 4th paragraph. If you’re still feeling defensive, you may want to explore the reason.

Parents are online… researching, writing, asking questions and soaking in any piece of information that may possibly help their children. We get twice as many emails from parents as we do from anyone else. (Of course this is not true of all parents. We have met with parents who say, “I already know everything my child wants,” or “This 20 choice device has more than enough for him!”  We’re not talking about them.). Parents will be with their child throughout his or her life. If that child is not able to grow up and function independently, the responsibility and decision-making will fall on the parents. They have the most at stake: the most to gain…and the most to lose. We have met parents who make it their mission in life to know their child better. We know a dad who completely reprogrammed an app to make it functional, because he wanted his son to be able to use the lightweight iPad when it was first released. We know parents who have learned their child’s communication system and gone into schools to train the professionals. They are more than “just a mom” or “just a dad.”  They become experts in their child and their child’s communication. We’ve even heard them say “this is my second language.”

Students deserve to have someone who cares about their ability to communicate make decisions about their communication systems.  They deserve to have people believe in their intelligence and respect their interests and passions.  For all of the excellent SLPs who passionately work to provide AAC systems and support to students, we know we are “preaching to the choir.”  For all of the parents who have forged your own path to implement AAC rather than allowing your children to be underestimated and remain voiceless, we applaud you. If any of the SLP/AAC evaluators sound familiar to you, please forward this to them or print it and slip it under their door. They may not be researching AAC or following the groups or Listservs online.

If you are a SLP/AAC evaluator who read any of the scenarios and thought, “Are they talking about me?” please assume the answer is “yes” and consider the importance of the role you are playing in people’s lives, and the future success or failure that depends on a person’s ability to communicate. Consider that you are spending a limited amount of time with students, that you are a stranger, and that they may not show you their true abilities in an hour or less. Consider the implications that come with your recommendations, if they are followed, and first, do no harm.