john paul's letterboarding journey
When my children John Paul and Thomas were born in 2006, I had been practicing as a speech language pathologist for six years. I worked with autistics in schools, at home, and in clinic settings, and I thought I knew everything there was to know. I was so wrong....
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John Paul was diagnosed with regressive autism around 18 months. He started losing words, engaging with others, stopped sleeping, and avoided any and all eye contact: it was a nightmare I couldn’t wake up from, and I was terrified. Parents had told me this same story over and over, but its impossible to grasp its gravity until it becomes your reality, until you are living it firsthand. Through a client, I learned about DIRFloortime. John Paul had proprioception problems along with vestibular issues and was very much a sensory seeker. He was low tone in some areas and high tone in others. Our experience working with this technique was eye-opening and explained much about why he behaved the way he did; it was not intentionally “bad” behavior like many assume. We also had an evaluation done which confirmed that his problem was significant. However, at that stage he still had a couple of words and some sounds, we thought he would still speak. Unfortunately, he lost everything and didn’t speak at all.
My husband and I took a series of evening classes about DIRFloortime and how to engage with your child in a playful loving manner. We learned that you must take the child’s lead and build interaction from there, and I believe this was one of the best things we ever did for John Paul. The DIRFloortime approach does not cause trauma, it’s fun, and creates play with a purpose. We tried PROMPT therapy for many years due to John Paul's motor planning issues, but we never had any success. There are children that have success in speech and language therapy with apraxia, but in John Paul’s case his apraxia was severe enough that we did not find success. We next tried Augmentative and Alternative Communication devices (AAC)—this is a great solution for many parents but did not work for us. The AAC device was cumbersome to carry around, and John Paul was always in constant motion due to his sensory seeking. We were unable to use it for meaningful communication. John Paul only ever used it for requesting! In addition, the device became a stim instead of a communication device. It just was not the right approach for us. There are children for whom AAC works, but it was not the solution for us nor many other children with ASD-3 (severe autism).
Years later, we tried Applied Behavior Analysis therapy (ABA). ABA is based on the idea that autistics do not have language and that everything is behavior based. In retrospect, I wish I had not done ABA. This approach assumes the child does not understand the world around them, when in reality the child simply cannot motor plan consistently. It was incredibly frustrating for John Paul and emotionally damaging. I can only imagine the frustration and boredom he must’ve felt. We had a few different ABA therapists come to the house, and John Paul was given candy every single time he did something right. It felt like dog training.
We stopped ABA shortly after I learned about Rapid Prompting Method or RPM at a PROMPT conference for continuing education. It was a small group, so the instructor had us all say why we were there. We were mostly speech language pathologists wanting another tool to help the apraxic kids we saw, but I also mentioned my desire to help my own child. Another participant shared about a conference she went to where a woman spoke about her teaching children to communicate with the use of a letter board. The method was called the Rapid Prompting Method (RPM), developed by Soma Mukhopadhyay. On the same day, I also got a text from a fellow speech and language pathologist telling me of a new approach she’s heard of for communication and insisted I try it with John Paul: it was RPM. It was at this time that Elizabeth Vosseller (a speech language pathologist) was learning the RPM approach and working closely with Soma. She came to Atlanta monthly to lead workshops for non-speaking, minimal speaking and unreliable speaking autistics in the Atlanta community.
A parent who had recently moved to Atlanta had worked with Elizabeth in Virginia and asked to learn more about this approach. This mom, along with an exceptional occupational therapist who would later be John Paul’s therapist, organized RPM workshops in Atlanta and had Elizabeth teach and work with severely autistic children. I was completely blown away by what I saw at the workshop. I watched the entire day mouth open, tears streaming. It was the first time I had seen children like John Paul able to communicate meaningfully, and all it took was spelling the words they intended letter by letter on an alphabet board. This mother is now my friend, and I joke that I practically tackled her at the workshop to see if we could get in on the next one (which we did, no tackling required!).
I asked Elizabeth if she felt my son, who was eight years old at the time, could do it and she said, “Yes, he’s been reading for years.” She was right. He did do it, and our lives were forever changed. Years and years of therapy without presuming competence, treating him as if he weren't capable of understanding the world around him, was all undone as I understood that he was in there the whole time, and this method was THE way to help him. I was overjoyed! Later, we went to Texas to meet with Soma herself. Since then Elizabeth, using the principles of RPM, has developed a method for teaching autistics to spell using a letterboard called Spelling to Communicate (S2C). There are now many practitioners who do RPM or S2C.
Because John Paul had such difficulty with motor planning and sensory input, we were also encouraged by one of John Paul’s teachers to incorporate facilitated communication (FC) into the letterboard. Facilitated communication gives physical input or resistance to help point to letters. There were times that John Paul required physical touch because he couldn’t feel his body. His sensory system didn’t integrate properly such that he required touch to feel grounded in order to spell. Motor planning and sensory integration difficulties are a huge problem for autistics. When you account for other issues, such as OCD, anxiety, and ADHD, it makes communication and functioning neurotypically impossible—and John Paul had it all! He was the bravest person I've ever known. He went out into the world with all of these challenges and never faltered in his positivity and joy for the promise of every single day. It took years of consistent practice for John Paul to get better and better at spelling. We started once a week with a therapist and progressed to daily practice, even if it was just five minutes.
Consistency matters.
Parents should do this with their children so they can form a relationship in spelling; a person can’t take a board and spell with someone that they’ve never worked with before. You develop a relationship and you learn your speller’s idiosyncrasies, and it is a foundational relationship to their ability to communicate. I sometimes equate this to a person who is blind, and has a seeing eye dog. You would never just replace the dog with another dog and say, "go for it!" This is important to remember when someone asks to spell with your child. They must have had instruction and practice with your child before they can successfully facilitate spelling. Unless you are a highly skilled practitioner with lots of experience, you must always respect the process and start at the very beginning of any spelling protocol, whether it be RPM, S2C, FC, or the spellers method.
John Paul made some the best friends of his life through the spelling community, and I have made many of the same. Up until his passing, letterboarding let him communicate from within a body he could not control and gave him a voice when so many thought he had none. In his honor, we strive to help parents in their journeys to help their verbally challenged autistic children find their voice.