John Paul’s Communication story When John Paul and Thomas were born in 2006, I had been practicing as a speech language pathologist for six years. I had worked with many autistics in school, home and clinic settings and thought I knew everything there was to know which is very funny looking back on it now. I didn’t know nearly as much as I thought.
John Paul was diagnosed with regressive autism around 18 months. This means that he started losing words, engaging with others, stopped sleeping, and lost eye contact completely. It was a nightmare I couldn’t wake up from. I was terrified. Parents had been telling me this same story over and over, but you never fully comprehend the gravity of it until it becomes your reality, until you are living it firsthand.
One of the autistic children that I had been working with had a mother who had done a lot of research about therapies and I was curious to speak with her about what she thought had made the most difference. She had been having her child do DIR Floor-time and was going to a therapy group in Atlanta called ITT’s for Children. Mili Cordero is the owner, as well as the head occupational therapist. Mili had tremendous experience with sensory integration disorders and I was blown away by her knowledge and expertise. I knew a little about a sensory-seeking versus sensory avoiding behavior and how all our sensory systems integrate and work together but learned so much more at this clinic. 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. It was eye-opening and explained so much about why he behaved the way he did. It was not intentionally “bad” behavior like many assume. Working with Mili and her therapists was a fantastic experience.
We also had an evaluation done by Barbara Dunbar who was with Floortime Atlanta. She confirmed that his problem was significant, but at that stage because he still had a couple of words and some sounds, she felt like he would still speak. Unfortunately, he lost everything and didn’t speak at all. My husband and I took an evening class from Dr. Dunbar. It was a series of classes about DIR floor time and how to engage with your child in a playful loving manner, and you take the child’s lead and build interaction from there. I feel like that was one of the best things we did for John Paul. The DIR- Floortime approach does not cause trauma, it’s fun, and you are playing with a purpose.
We tried speech therapy for many years doing PROMPT therapy mainly since John Paul had so many 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 so severe plus he had the regressive autism diagnosis as well. Children who just have apraxia, we call it childhood apraxia, make great progress while kids like John Paul often don’t. Children who have higher functioning autism like ASD-1 or 2 or get the diagnosis PDD-NOS (pervasive developmental disorder, not otherwise specified) also seem to have better outcomes in my experience. Then we tried AAC devices which are augmentative and alternative communication devices. This seems like a great solution but did not work for us. John Paul never used it except for requesting. It was not ever used for any meaningful communication. It was something cumbersome you had to carry around and John Paul was always in constant motion being a sensory seeker. Besides that, he would use the device to stim on. It just was not the right approach for us. There are children that an AAC device works very well for, But AAC was not our solution, and was not the solution for many of our friends, whose children also had severe autism or ASD-3 (severe autism).
Years later, I was talked into doing ABA therapy. ABA stands for applied behavior analysis. ABA is based on the idea that autistics do not have language, and that everything is behavior based. I wish I had not done ABA, because John Paul had such severe apraxia and sensory integration issues, he was unable to achieve goals. If you don’t get a certain number right in the row ewith ABA you never make it to the next level or goal. This approach assumes you don’t understand when in reality it’s just that the autistic cannot motor plan consistently. I’m sure it was incredibly frustrating for John Paul and emotionally damaging. I have no idea what he went through at different ABA schools and clinics, but I can only imagine the frustration and boredom he must’ve felt. We also had a few different ABA therapists come to the house. John Paul was given candy every single time he did something right which I really hated because it felt more like dog training, and I never saw any carryover. We stopped ABA shortly after I learned about Rapid Prompting Method or RPM.
I was 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. The woman sitting next to me who was also my partner for learning the prompt techniques, told me she had just gone to a conference and heard a woman speak about her approach for teaching children to communicate and be educated with the use of a letter board. The method was called Rapid Prompting Method or RPM. The woman who developed it for her autistic son was Soma Mukhopadhyay.
While attending the same conference, on the same day, I also got a text from a fellow speech and language pathologist and friend telling me of this wonderful approach she’s heard about for communication and I must try it with John Paul. It was also RPM. I felt like the universe had finally spoken to me because in her text it also said they were doing workshops in Atlanta and she gave me the information.
It was at this time that Elizabeth Vosseller( a speech language pathologist) was learning the RPM approach and working closely with Soma. She was coming to Atlanta monthly at that time to do these workshops for the non-speaking, minimal speaking and unreliable speaking autistics in the Atlanta community. A parent who had moved from Virginia to Atlanta had been working with Elizabeth in Virginia and had also asked her to learn more about this approach. This mom, along with an exceptional occupational therapist who would later be John Paul’s therapist, organized these workshops in Atlanta and had Elizabeth come teach and work with severely autistic children and young adults using rapid prompting method. I was completely blown away by what I saw at the workshop. I did not have John Paul there, I just wanted to check it out and see what it was all about. I watched the entire day, mouth open, tears streaming. I cried for a week and slept very little. It was the first time I had seen children like John Paul able to communicate meaningfully by spelling out 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. I remember asking 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.” Sure enough, she was right. He did do it and our lives were forever changed. He had been 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 the woman herself, Soma. It was an incredible week.
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 practitioners all around, who either do RPM or S2C. The spellers Method is another spelling approach to investigate but we had not had a chance to look into it before JP passed.
I think it’s important to also say that because John Paul had such difficulty with motor planning and his sensory input, we were also encouraged by one of John Paul’s teachers to incorporate facilitated communication (FC) into using the letterboard. Facilitated communication is giving 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. Add in other possible issues, such as OCD, anxiety, and ADHD, and it makes communication and functioning neurotypically impossible. John Paul had it all. He was the bravest person I know to go out into the world with all of these challenges, and to still be positive and excited for the day. As far as I’m concerned, all of them are brave and inspiring.
It took a while (it does not happen overnight) and a lot of consistent practice for John Paul to get better and better at spelling. We worked once a week with a therapist and then I tried to practice with him every day even if it was just five minutes. Consistency matters. You want to do this with your child because then you develop a relationship in spelling, which is very important. A person can’t necessarily take a board and spell with someone that they’ve never worked with before, because you do develop a relationship and you learn your speller’s idiosyncrasies. It is a very important relationship. There is trust involved. 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 so important to remember when someone asks to spell with your child. They must have had instruction and must practice with your child before they can be successful spelling with him/her.
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 rapid prompting method, spelling to communicate, facilitated communication or the spellers method.