After posting the video of Ryan spelling with his letter board, we received the following questions. I wrote back directly to the person who submitted them, but I thought that they were great questions and that our readers could benefit from them. With her permission, I have posted the questions below and I have answered them.
1. Does Ryan receive ABA therapy? Has he ever?
2. How did you find out about RPM and how it works for Ryan?
3. Many people are skeptical of RPM. What would you tell those people?
4. Have you ever tried having Ryan type on a computer? If so, what happened?
1. Ryan has received a lot of ABA therapy. He started right at two years old and we continued ABA until he was seven years old and we had just started RPM. I think that most kids would benefit if it was for self help skills or life skills, not for discrete trials or drills. Ryan had early intervention so he had about 15 hours of ABA a week for the first few years and then when we moved to California he received 10 hours a week after school. They can be used in conjunction with each other, but we did not feel like Ryan benefited from his ABA program and this was apparent once we began RPM.
If I could do the early years after his autism diagnosis all over again, I would have relaxed. I was so frazzled with trying to get a specific amount of hours in and making sure that Ryan’s schedule had him engaged at all times, that it made me nuts (not to mention my family and likely Ryan too.)
2. I saw Soma Mukhopadhyay speak at a National Autism Association Conference when Ryan was four years old. I thought the whole thing was interesting but I felt as though he would be speaking to communicate so I didn’t really pursue it and he was very young at that point.
I then saw the movie A Mother’s Courage: Talking Back to Autism and found it intriguing as well. (If you haven’t seen that movie it is narrated by Kate Winslet and the mom explores a bunch of different autism therapies as she comes over to the United States from Iceland and finally finds Soma and the second half of the movie is about her son’s journey with RPM.)
The third time I encountered RPM was in a waiting room for a treatment for Ryan. I met another mom who son was starting his first week of the treatments and we were on our last day. I asked her how she felt the treatment was going and she said that her son communicated that he had headaches. I looked at her and was so surprised and said “Your son can communicate that!?” She said yes and that he communicated with a letter board. She brought him over and I had noticed him earlier as he was an older child who was biting on a board book. I completely had underestimated him; I just figured he was a child with severe autism. (I regret that.) He then began spelling out the most eloquent message about Soma and how his whole life changed and and how if he had never met her that he would’ve never been able to communicate his thoughts and feelings. I was a blubbering mess and was sobbing for about 10 minutes. I knew we had to pursue it for Ryan and I got him into a camp (three months later) with Soma’s apprentice, Erika Anderson, who happened to be in the Bay Area (where we were living at the time.) The mom in the waiting room warned me that it would not be easy and that open communication would take a while but I just knew that this was the right path for Ryan and I was willing to be patient and wait. We focused on academics for the first year (and we still do) as Ryan was only in first grade and I didn’t know how much he knew.
As far as how I knew that it would work for Ryan? I knew that he was capable of learning and I was excited about the possibility of teaching him grade level academics. I knew that a lot of the responsibility would be on my shoulders to learn the method and become his teacher, and I was not going to let either of us fail. I knew that Ryan would work hard too if he knew what the end result would be.
3. That RPM has changed our lives completely. Ryan’s life and our family’s lives are infinitely better. Ryan went from extremely babyish tasks to now doing above grade level work with me. We recently did a lesson on the JFK assassination and he found it fascinating and he now wants one on 9/11. I take him to museums, movies, anywhere he wants to go and he loves it. We have read all seven Harry Potter books and three of the Percy Jackson book series. Prior to this we were reading baby books. I now know that Ryan had always been listening to everything that we had been saying and had been taking it in, he just had no way to show it prior to this.
I would say that autism does not have to be a negative thing as people portray it. Ryan has made my life and the lives of all the people around him so much better and he has a truly different and amazing perspective on the world. I would’ve never imagined that I would do the lessons that I am doing with Ryan today, two years ago. This wasn’t an overnight miracle. Ryan worked very hard everyday to get to where he is today.
We have encountered some doubters along our journey. I think that it is important to add that Randy, Ryan’s dad and a born analytical thinker, was skeptical of RPM when he had only seen videos of it. When he finally saw it in person (in the waiting room) he knew it was the real thing.
A close family member recently confided in me that he wasn’t really sure that Ryan was spelling out his thoughts when he initially read the blog. He had last seen Ryan in July 2014 and thought that it was wishful thinking that a child like Ryan could have such incredible thoughts and communication. When he saw Ryan spell for the first time in September 2015, he realized how wrong he was.
Honestly, what I would ask the skeptic (if he/she is working in the field of autism as usually the skeptics are) is how many kids is he/she working with that are doing grade level and above material and doing all of the extracurricular things that we are doing? Our lives are completely different than they were before. Is he/she reading Harry Potter to any of the kids? Are the kids happy and excited to work with him/her (or are they running away and hiding?) We had not gotten to a lesson today (the day I initially answered these questions) because Ryan had his book club and we were finishing the reading for the book club. I asked him what did he want to do next (because we had to run errands) and he spelled I WOULD LIKE A LESSON.
Ryan is asking for his education. I can’t predict what he’s going to say. Some of the vocabulary he uses I would never dream of. I think the big challenge with this is when you see it in person it really is not an issue of authenticity for the kids who are doing it very well.
The main goal is to focus on the academics for a very long time before the open ended questions. Ryan will sometime struggles with open ended questions when it’s not right after a lesson (or he is out in the community with a lot of distractions.) He doesn’t want to feel like someone is testing him. He can write anything after a lesson when the question is open ended, based upon the lesson, and requires creative writing or thinking. That really gets his brain working.
The thing that really makes my blood boil about ABA (I apologize if this offends anyone, but usually the skeptics are in the ABA world) is that we would never treat a typical kid the way that drills are done in ABA. If the kid gets it right the first time, why do they have to do it 7 out of 10 times? Any kid would try and escape and would certainly be bored. And really, one M&M for a correct answer is not worth it (and ask my family, I love M&Ms.)
And why can’t we just assume that kids with autism have a normal or sometimes even above normal intelligence but that they just can’t communicate it?
The example I like to use is that when a five year old is entering kindergarten. That child doesn’t have to prove how much he/she knows to get an education, but when an autistic five year old goes to kindergarten, he has to take tests/assessments and prove that he’s allowed to be there. It’s just not right.
4. As far as a typing on a computer, we are working towards that. We are very low-tech right now because Ryan is only nine years old but I’m actually working on him holding is own board and sometimes laying it flat to spell. There are many other kids who actually have moved to typing. I don’t know if you follow Faith, Love, and Hope… With Autism, but Philip types now. Ido of Ido in Autismland also types to communicate.
We have tried a little bit with the keyboard but I’m not sure he’s ready for that. We do have another provider, Lenae Crandall, coming into town and she probably will try him on a Bluetooth keyboard for the iPad next week.
As I do with all of Ryan’s posts, I asked for his opinion prior to posting it. He replied. YES TO LIKING IT. I KIND OF ALWAYS LIKE WHAT YOU WRITE.
I asked Ryan if he had anything to add to the answers for these questions and he replied: VISITING WOULD BE GOOD TO ANSWER THE QUESTIONS IN PERSON.
I hope that this helps answer some of the questions that many of you might have had. We are only half way through April and Ryan and I have a lot more work to do for Autism Action Month! Stay tuned!