Using RDI for Non-Speaking Children with Profound Movement Disorder

This article was originally written and published in 2010 by RDI Consultant Stephannie Motuz

I am a speech-language pathologist employed in a program that originally only provided communication support to non-verbal children with severe movement disorders. I was (and I suppose I still am) a specialist in helping children use compensation strategies such as augmentative and alternative communication (AAC) when their hands and mouths can’t manage the physical work of gesturing and talking. In the first 10 years, our program had contact with over 300 children and their teams in their region. Referrals came to us from the community teams who felt stumped in programming for children whose progress was not evident after several years. I was a consultant to the community team; a consultant to the consultant, so to speak. My own perception of our program’s success was poor. And my job satisfaction was definitely on the line.

My boss suggested that we do a program review so we might clearly define what I was struggling with. After reviewing 300 client charts, we could show that we had a positive impact on the child’s communication functioning with only 15 percent of our clients. Can you imagine going to work knowing that what you did would make no difference 85 percent of the time? And how come I was the only one complaining? No one seemed to want to talk about it. When I would bring it up, most people seemed to be saying, “What do you expect? It’s the nature of the population that you serve.” And the discussion was over.

The review showed that what I seemed to be doing at work was essentially filtering through each of the children referred to us, trying to determine if these non-speaking children were actually ready for symbolic communication or if they were still at the pre-speech stage (cognitively) using a criteria I had picked up from some research by Wetherby (Wetherby, A., Cain, D. H., Yonclas, D. G., & Walker, V. G. (1988)). This research suggested that generally speaking, children who were ready for symbolic communication were able to gesture at an average of about 1 gesture per minute. Studies also showed that children who were on the doorstep of speech could also perform at least one pretend play schema with a toy (such as “kiss” a baby doll or “drive” a toy truck etc). For a nice review of this, I would refer the reader to Use of Gesture Development in Profiling Children’s Prelinguistic Communication Skills by Elizabeth R. Crais, Linda R. Watson, Grace T. Baranek of The University of North Carolina, Chapel Hill published in the American Journal of Speech-Language Pathology. Deciding which children with profound Cerebral Palsy were in this developmental stage – a stage where typically developing children would have reliable and controlled movement (which the CP children didn’t have) was my job.

I somehow seemed to be able to peel apart the movement challenges from the thinking challenges. The consultants that I worked with often said that I was “reading the children’s minds.” My clinical practice seemed to be based on art (subjective) – not science (objective). That is until RDI® showed me that indeed, there was a science to what I was doing. RDI® gave me the vocabulary to explain what I was doing and so others could be taught to do it too. Besides adapting the activity and my expectations around their physical participation, I was reading their gaze shifts so I could pace the activity, allowing them plenty of time to think and initiate responses. I would only offer physical assistance after I saw their intent and would keep simplifying until I found a place where the child could share in some coordination with me. Our interactions were clumsy – but once I got “in sync” with the child (playing at their cognitive level and processing speed, while finding them some simple doable physical role), I always got great big smiles from everyone there. So, when I found those children who could show communication intentionality and symbolic thought, those who seemed ready for symbols (first words), I would suggest and then help the local teams teach Aided Language Stimulation (Goosens, Crain and Elder, 1992). Over time the “three point gaze shift” would work its way out and children would learn to point with some part of their body or their eyes.

Children would be exposed to a gradually increasing number of static picture communication displays (picture vocabulary). Next, we would introduce dynamic voice output communication technology and work out their individual access to computers. Lastly, we would teach grammar. In my opinion, AAC was and is a brutal way to communicate – slow and tedious (the average AAC communicator says about 10 words a minute to our 120!) and not always understandable (computer voices are only understood about 70 percent of the time -but this is improving as of late). And yet, these were the children who made up the percent of “successes” of our caseload. The recommendation we set for the children that we evaluated as “not quite ready” for learned symbolic communication (the other 85 percent) was to continue working on non-verbal (before speech) communication. The targets I set were standard practice and went something like “promote instrumental communication acts such as “more” signals and “no” (rejections), promote the child’s ability to initiate by making choices using a pointing gesture (to objects first and later to pictures), and promote taking turns and pretend play.” But to be honest, I witnessed very few children (read: none) leaping from the pre-verbal stage to the symbolic communicator stage despite my efforts and those of the community support team. It’s a familiar story that most pediatric speech-language pathologists will tell. These goals are great, but helping these children actually “get” there was stumping us all.

So in a nutshell, 85 percent of the children referred to us were in the pre-symbolic (non- intentional) communication stage and what we had been recommending seemed to have no impact on moving them along the developmental pathway. My boss was right, I needed to define what the problem was. Defining the problem is halfway to the solution. The story doesn’t end there, of course. It hasn’t really ended at all. After apprenticing in RDI for 2 years, we knew we finally had a way to help children with movement disorder “get” to intentional and symbolic communication. So we completely changed our service delivery model. The RDI® Program is such a good fit for this population and our agency (family centered service!). It has given us a method to target all the meaningful foundational thinking and pre-verbal communicating that usually occurs before children’s movement is regulated anyway. The strength of the RDI® Program is its value that there is so much more to functional communication than simply having access to symbols or speech.

When I need to adapt RDI® Program targets for a CP child, I just have to remember that the most important thing is to preserve the intention and meaning of the target (because the targets are about thinking more than doing). I can then define an acceptable alternative for the means of communicating it. Even when we work on physical social coordination for instance, we can adjust the passing criteria in a way that is relative to that child’s degree of controllable movement. We only need to see that the child understands when, where and why they might need to refine their movement. Our progress is always slow and steady, but I have come to expect that most if not all the children will make the leap from the pre-verbal stage (with no intentional communication gestures) to quite intentional and ready for first words (and beyond!!!). And I say “our progress” because I am an apprentice to these kiddos and their parents as much as they are apprenticing to me.

What I have seen these children overcome speaks volumes of the impact of thinking and intention on muscle control. In these past 5 RDI® years, I have seen some children with chronic low tone develop near normal tone. I have seen some children who chronically drool, stop drooling. I have seen some children with “intractable” reflexes learn to use their intentions to inhibit them. And I have seen some children outgrow their diagnosis of Cortical Visual Impairment. But most satisfying has been witnessing young learners completely bypass the need for AAC compensations all together because their own gestures and speech outperform any device (for speed and understandability). Now that’s job satisfaction.

 


Stephannie Motuz, MSc. is a Speech-Language Pathologist and mother of two teen boys. She has been working at the Rehabilitation Centre for Children in Winnipeg, Manitoba, Canada since 1993. Her interests include augmentative and alternative communication and socio-cognitive development in children with Pervasive Developmental Delay. Stephannie shares her area of expertise at national conferences and locally with parents, educators, allied health care providers and community support staff. She has been certified in RDI® for the past 4 years. She is involved with a two-year program development review in using RDI®. She is also the lead clinician in a research project studying RDI®’s effect on families and children affected by autism.

Contact Info: Stephannie Motuz, M.S., CCC-SLP 633 Wellington Crescent Winnipeg, Manitoba R3M 0A8 Phone: 204.453.9855 | Fax: 204.452.7152

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