Philip made a friend today! Today is a landmark moment because it is the first time Philip exchanged original dialogue with a peer. I say original because I wasn’t the one telling him, “say hi” or “say bye, “ which is a common social exchange all our kids are rehearsed to say. The words were all generated from Philip, even though I did have to hold his board for him and be his physical voice as he spelled.
Today was a very happy day for me. In the morning Philip and I visited some of my friends, one who was visiting from out of town. There were a lot of kids there, six kids ranging from age 8 to 17. Several were playing Nintendo Wii and were laughing and having a fun time. While Philip didn’t join them, he seemed to be observing them, sitting quietly on the couch behind them (an improvement from stimming alone in the corner with a pop bottle as he did the last time we all got together) . At one point my friend asked about my new communication with Philip. I wasn’t sure if Philip would demonstrate his new skills with them, but I decided to try. I brought him over to my friends with his stencil board and introduced him to my friends, telling him how we met and how long we’ve known each other. Then I asked him, “Would you like to say anything to Miss C and Miss J?” Philip spelled, “Real nice to meet you.” My friends had tears in their eyes as he spelled and my heart was bursting with pride.
Later that day we visited my friend Susan and her son Michael who is 13. Michael first learned to communicate with Soma when he was 8. He is now able to type on a keyboard and iPad. He goes to public middle school and with the help of an aide, has been able to take regular classes with his peers. His mom even proudly showed me his social studies final exam in which he got an 87%. We have been so blessed to have them as our mentors and role models as they are blazing a trail for a lot of families like ours in Buffalo to follow in their footsteps.
Philip has expressed an interest in learning to type, so Susan showed us various things we could try. There are a range of keyboards you can hold up like a stencil board and eventually lie on the table as less support is needed. Michael uses a bluetooth keyboard the size of a cell phone to type onto an iPad program called Proloquo. It then reads his text out loud. Susan was good about explaining things to Philip and assumed he was intelligent and listening even though he would walk around and look off into the distance as if he were not paying attention.
We then got our boys together to “talk”, Philip using his stencil board and Michael using his iPad. This is how it went:
Philip: Do you like school?
Michael: Yes. I am very popular at my school. Do you want to learn grade level stuff?
Susan: What are your favorite subjects?
Philip: I am interested in math.
Michael: The brain and neuroscience.
Susan: Is there anything else you want to tell Philip about your school?
Michael: The teachers are great.
The boys then had fun jumping on the trampoline together. It was such a happy visit. Susan and I vowed to make it a regular routine to get together with the boys.
Tonight I asked Philip what his favorite part of the day was. He spelled, “Talking to Mical.”
I think this is the beginning of a beautiful friendship!