I cannot describe how exciting this process has been. One year ago, we attended a Rapid Prompting Method (RPM) training in Buffalo. RPM is "an academic program leading towards communication, the expression of reasoning and understanding, more reliable motor skills, and greater sensory tolerance" https://www.halo-soma.org/. RPM uses a stenciled letter board that Eddy puts his pen or pencil through in order to spell a word.
When we saw how alphabet-heavy RPM was, we realized that this could be something that really appeals to Eddy. Anyone who knows Eddy well will know that he has been obsessed with the alphabet since he was a toddler. He knew all of his letters and their sounds by the time he was two years old. (His wonderful ABA therapist Ms. Rae discovered this ability before his 2nd birthday.) All of Eddy's favorite things have to do with the ABCs: his alphabet bus, his alphabet train, his alphabet books, and his alphabet YouTube videos on the iPad.
This really encouraged us to at least try RPM with Eddy. Up to this point, we were very frustrated and disheartened by his lack of progress. Eddy was not meeting his IEP goals that we knew he should be meeting. One was to recognize numbers up to 20. Eddy had been doing this for us since he was two, but he wouldn't consistently show what he knew in school. So Ed and I spent a lot of time last spring discussing the fact that a change needed to be made. Change is not easy, especially when autism is involved, but we knew Eddy was capable of so much more. We knew he was smart, and we knew that we needed to find a way for him to communicate and demonstrate his capabilities.
After the training in June, we bought a letter board, and Eddy took to it very quickly. He wanted to poke the pen through the letters as we sang the ABCs all the time. He started spelling words soon after. Getting "open communication," which is the end-goal of Eddy answering questions about how he feels, what he wants, what he's thinking, etc., is a much higher level than him spelling "mommy" or "cat," and it is much more difficult to achieve. We really wanted to communicate openly with Eddy, but everyone we had spoken to about RPM (shout out to the wonderful ladies at Buffalo RPM!) let us know that it could take years to develop open communication. But we worked with Eddy on the letter board every few days, and he seemed to enjoy it.
Because RPM requires the ability to spell words, Soma recommends that students learning the method are at least eight years old. Eddy turned eight last July, and so it was the perfect time to start learning RPM. During the first session, Soma was very complimentary and said to Eddy, "I can tell your mom has been working hard with you." I felt great to receive the compliment from Soma, but really it was just that Eddy had taken to spelling words so quickly. It definitely helped that he loved letters, and he had been watching academic (alphabet, numbers, colors, shapes, etc.) YouTube videos for years.
At the beginning of the second session about an hour later, I asked Soma how to achieve open communication. She demonstrated how to start and gave us some helpful guidance. It was during this second session that Eddy gave his first-ever open communication. Soma asked him what his favorite time of day was, and Eddy spelled "morning." Ed and I looked at each other with tears in our eyes. Eddy really does love morning and is always so happy when he wakes up, and we saw him answer the question with our own eyes. She then asked what his favorite zoo animal was, and he spelled "monkey." It was the beginning of an incredible journey into our sweet little boy's brain.
Since September, Eddy has flourished. He started in an autism 6-1-1 classroom at a new school. Even though he had only been in his new school for a couple of weeks, his teacher and speech therapist (as well as an ABA therapist and autism specialist who worked with Eddy in our home) all took the day off of work to come to Buffalo and watch Eddy's sessions with Soma. That is dedication. We have been so blessed this past year to have people go above and beyond and express initiative to learn new methods, if it means that it will help our boy communicate. We will forever be grateful for the team that we have in place, as they love Eddy and truly want to see him succeed.
The transition to a brand new school, teacher, and environment went surprisingly smoothly. Eddy loved school this year. When I asked him in March if he was happy to be home (and I really thought he was going to spell "yes," because he had been so happy all the time), he spelled, "I miss school. I love my teacher Miss Courtney." This made me so happy because I never again had to guess if he liked going to school every day or if he was scared. He has been Zooming with his teacher and therapists every week, and he loves seeing them.
Through talking with Eddy using the letter board, we have discovered these past few months that Eddy is so funny. He has a quirky sense of humor that we had never been able to glimpse. A few examples of when Eddy has made us laugh:
1.) We were talking last month about how Neil Armstrong spent three hours on the moon. I said, "Eddy, what would you do for three hours on the moon."
Eddy: "Next to nothing." Me: "Why would you do next to nothing?" Eddy: Because there's nothing to do."
2.) We have been working on toilet training, and he was in a very stubborn phase around Mother's Day. (He's been doing great this past week though...say a little prayer that it continues!) He went on Mother's Day, but the next day he wouldn't go. So, we said, "Why won't you go today? You went yesterday!" Eddy: "It's not Mother's Day anymore."
3.) Sophia (a dedicated teacher who just graduated from St. Bonaventure with her Masters Degree and who works with Eddy every day in our home), was doing a lesson with Eddy and couldn't find the letter board anywhere, even though she had had it a few minutes before. Sophia: "Eddy, where is the letterboard?" Eddy: "Behind the chair. I pranked you so hard. I'm so independent. I can hide things."
4.) Sophia: "Eddy, when will you get toilet trained?" Eddy: "Monday" Sophia: "Why Monday?" Eddy: "I have no other plans."
In addition to discovering his amazing sense of humor, we've also learned that Eddy hears and absorbs everything we say, he's insightful, and he has a photographic memory. His mathematical ability is advanced. I always knew Eddy was smart, but the level of his intelligence has blown us away.
Communicating with a letter board definitely takes practice. At first, I was the only one Eddy would openly communicate with (and this took months of trying). Then Sophia kept working with him, and they now have full-on conversations. Eddy loves having daddy read him the Bible every night and they have a Bible study using the letter board each morning over breakfast. Eddy often remembers small details from the previous night's passage, he can tell you that he is "Catholic," that "Jesus is the Son of God," and that "Gospel" means "Good News." One particularly poignant conversation recently went like this:
Ed: "What makes heaven such a good place?"
Eddy: "Eddy can talk there."
For the first time ever, I’m going to end Eddy’s blog with words that Eddy wrote himself. On Saturday, he was communicating so well with the letter board and wanted to talk about how he was going to change the world. This is what he said. As you read it, keep in mind that the first glimpse we got into Eddy’s mind was less than nine months ago. We still pray every night that Eddy will talk, and I realized the other night that God has, in a way, begun to answer our prayers. 💖
"All I want to see is a very happy world. Someday while I am President, I have to change the world, how about that idea?
First, I will make racism illegal. Let people in.
I have an idea, listen to this. Raise awareness about autism. I am so smart.
Sometimes people that don't know me laugh at me but laugh is not nice. Have more empathy.
Mommy dreams of a kind world. I do too.
Nice people are only allowed in my White House."
- Eddy, June 13, 2020 💙
