Presuming Maggie’s competence

My daughter Maggie was a toddler the first time I heard “presume competence.” She was already diagnosed with complex disabilities. Her doctors described her as severe and profound: severely delayed, profoundly autistic, severe auditory processing disorder. We were bewildered and afraid, and didn’t know what we were supposed to do. One doctor said, “take her home and love her.” He said it kindly, but he implied “don’t expect her to learn much.”

The least dangerous assumption

Then, through an advocacy program called Partners in Policymaking, I heard the mantra “presume competence.” The term evolved after Anne Donellan argued that, in the absence of conclusive proof about a student’s capacity to learn, the least dangerous assumption is that the barriers holding a student back from learning are in the instruction, not in the student. Rather than question what a complex student is capable of learning, we should focus on removing the barriers to learning. What can we change in the opportunities, environment, instruction, experiences, and technology that our complex students have access to? Her argument was simple: if we presume that the student is too disabled to learn, then we will stop trying to teach, and that is very dangerous. It is more dangerous to presume the student cannot learn, than to presume the student can learn if only we teach more effectively. The presumption of competence - the presumption the student can learn with quality instruction and appropriate support - is the least dangerous assumption.

For complex students like my Maggie, this was revolutionary advice.

Her diagnosis did not have to be a life sentence. I was excited. I had no control over my daughter’s genes and chromosomes, but I could maximize her opportunities and experiences, provide assistive technology, and advocate for quality instruction. As she grew, Maggie attended regular schools and classrooms, developed strong friendships, loved Girl Guides, traveled widely, and had play dates and sleepovers. She developed a love for various pop music stars, train and bus travel, window shopping, and lazy afternoons spent in a hammock with her iPad. She still had significant disabilities, but her life was rich and stimulating and fun.

Finding a way to access language

Communication, however, was still elusive. I presumed this was the result of her genetic syndrome. Maggie has Angelman syndrome, so her failure to learn language was surely a function of her disability. But Maggie was different even from her peers with Angelman. She often appeared to live in a world without language. She was acutely aware of everything we did, always watching for cues about what was coming next, but did not seem to tune into speech and rarely responded to the words we spoke. Strangers, and even classmates, often assumed she was deaf. Maggie learned to use her body to become more expressive, but in speech therapy, she failed to match photos or to consistently make requests. She was provided a 4-button speech output device. When she refused to use it, it was replaced with two single-message voice output buttons; one was recorded to say “more, please” and one said “all done”. She used them as projectiles rather than for requests. I trusted the speech and language professionals who told me this was evidence-based practice, and I presumed that Maggie’s failure to learn to use the buttons was the result of her own disabilities.

Then a special educator named Mary-Louise Bertram began sharing stories of children like Maggie who communicated on a range of topics. They weren’t just making requests or pointing to the correct answer. They were expressing ideas no one knew they were thinking. Mary-Louise explained that when it comes to Augmentative and Alternative Communication (AAC), the presumption of competence is that children who cannot use speech require long periods of time simply observing a model of language that they, too, can access and explore. They require rich interactions with language and other people, around the things they are noticing and learning, just like their typical peers. Her students were immersed in models of adults using their same AAC to communicate all day long. This modeling was like building a ramp that allowed the children to access to the words in their AAC. Mary-Louise argued that if we provide our complex children with the same learning environment and opportunities and experiences that typical kids require to develop language, and if we provide quality instruction and create access to appropriate technology, even our most complex kids can access language.

I watched countless videos of modeling AAC. It didn't seem too hard. Just point to visual symbols on Maggie’s AAC while talking; how hard could that be? But learning to model AAC with Maggie was challenging. First, I had to develop new habits, like always having her Proloquo2Go turned on and within arm’s length. We needed an extra iPad and laminated copies of her vocabulary so that we had multiple tools to model. And then there was Maggie herself. She turned her head away when I tried to model her AAC. She left the room if I persisted. She shoved the iPad away. It seemed she already felt that speech bombarded her; how would adding symbols improve this? All the success stories I saw on social media were kids who seemed to already understand language and were deeply motivated to learn how to use it. I struggled to presume Maggie’s competence, that language could ever be meaningful to her.

What did presuming competence mean for us?

When I admitted that I wasn’t sure Maggie understood much spoken language, other parents told me to presume competence: to them, “presume competence” meant I should just presume she understood speech. But her struggle with receptive language was real: presuming she understood everything I said wouldn’t change that. Maggie has a disability that profoundly impairs her ability to process spoken language. I slowly realized that the presumption of competence meant we must explore new opportunities, experiences, environments, technology, and instruction to support her processing.

I realized that presuming competence in Maggie is really presuming it in myself.

When I presume competence, I am presuming that I can learn how to accommodate her disabilities and support her to learn. I learned how to present symbol displays to my daughter while standing with my back to her, bringing it into view only on the periphery of her vision. Before, I had thrust symbol displays and her Proloquo2Go right into her face; no wonder she turned away! I learned how to use the core words on her Proloquo2Go home page to speak in short sentences. I learned how providing the visual of her Message Window enhanced her comprehension. I learned how the text-to-speech electronic voice was much more consistent - and often easier for her to comprehend - than my own voice. I believe that Maggie began to attend to language only after oral speech was presented visually. Spoken words were so fleeting, but visuals persisted long enough for her to process them. I learned that my daughter is intensely visual and struggles to both look and listen at the same time. I learned not to speak while using her symbols, but just let the symbols speak for themselves. I learned to give her much more time to process what I had said and consider her response.

Presuming competence has meant presuming that what Maggie needs to develop language is the same as what any child needs: lots of people speaking her language with her for many different reasons. Presuming competence means we are capable of figuring this out. It has meant that each setback or failed experiment was part of our own learning process, weeding out that which doesn’t work.

Four years into our journey with modelling AAC, Maggie is still emerging as an AAC user. But her comprehension of spoken language has skyrocketed.

Maggie used to just watch pop music videos, but now she laughs at the dialogue in her favorite TV shows. She takes pleasure from language! We have learned that her comprehension of speech is always strongest when we use her AAC to speak with her. She craves watching other teenagers use her AAC as well. She has used her Proloquo2Go to generate messages on everything from who is her hero (Ruby Bridges) to asking when school holidays will end (not soon enough), to irritably instructing me to “Just go. Now.”

One day, Maggie’s assistive technology specialist was reviewing some of the messages she has generated at school and he said, “can you believe we thought she had severe intellectual disability?” I was so taken aback. Maggie’s disabilities are the same as they were before we introduced AAC. What has changed is us: we changed the instruction, the technology, and the opportunities in a way that removed some barriers to my daughter’s learning. Removing those barriers allowed her to learn. We presumed her competence, and ours as well.