The pitfalls of blogging....
Those of you who know me well, know that my children's real names are not "Grace" and "Joe". I have aliased them herein for their privacy. My kids know that I write, but they don't know the content or publication media, except for some stories that I have written for them which are published in-house by SickMother press (i.e. me inkjet printer!).
So the other night, at bedtime, Joe says "Mom, I have to ask you a question." I know from experience that this phrase usually means Something Significant is coming, so I braced myself and told him to go ahead.
"I saw that you were writing an article about a guy named "Joe" who has synesthesia, and I was wondering if I could meet him, because I wanted to ask him some questions"
..and my heart broke.
"Did you read the full article?"
"No. I just saw some over your shoulder."
"What question did you want to ask"
"well, you said that "Joe" can turn synesthesia on and off..." I finished his sentence.
...and you want to know how to turn it off?" (because in fact, he can turn it ON at will (sometimes) but he can't disable it)
"Yes. I want to know how to turn it off"
I took a deep breath
"I'm sorry honey, but there is no way for you to meet "Joe". You see, you are "Joe". I was writing about you. I just didn't use your real name" His eyes went huge.
"I am "Joe"?!" ...you mean... you were protecting my identity?"
"so you don't know another kid with synesthesia?"
"Apart from that kid in California that has number-->color synesthesia... No."
"You know, part of the reason I wrote that piece was because I was hoping for find other people out there who might have the same type of synesthesia as you have."
"Have you found any ?"
"No. But I did find out about a young woman who has a different form than you have..." And I explained about Yanub's daughter, who has sound--> color synesthesia. Joe thought this was pretty cool.
We talked for a bit about "Joe" and about himself and how -even if he did meet someone with the same type of synesthesia that he has, the mechanism may be different in each person, so he would probably need to learn about his own synesthesia in order to control it. But I told him I understood that it is always good to meet another person with the same thing, because then you don't feel so alone. I went on to explain that one of the reasons I had wanted to get him hooked up with the university was that maybe those guys might be able to help him understand his synesthesia better and be able to help him to control it. And maybe they might know other kids who have it. Because universities can be a magnet for this sort of stuff.
So Joe said that he wants to have another try with the university. He asked me to set up another appointment with the head of the Autism Department.
Remember at the beginning of my last post, I wrote that maybe writing about Joe's synesthesia might help Joe? Well, It appears that -in an unexpected way- it will!
Blogging can be strangely effective.
...last night, Joe pops out of bed in a state of excitement and stood in the doorway, flapping and bouncing from foot to foot, to tell me this:
"I was trying to see what she sees, but it is too hard!"
"what?... See what who sees?"
"The woman who can see sounds. I wanted to to try it."
"(eek!) Did it work?"
"No... ...well ...Mom! There are sooo many sounds! I tried to do it and ...and ...it was just too much!"
"So you are going to stick to emotions, then?"
"Joe: "Yes. I'm going to stick to emotions."
(Thank Christ for that!)