Joe meets "Joe"

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?"
"Yes."
"so you don't know another kid with synesthesia?"
"Apart from that kid in California that has number-->color synesthesia... No."
"Oh"
"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.

PostScript:

...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!)

Comments

[Renee]

Ya know, I was watching a documentary about Savant skills on Nat Geo last week where one thing it mentioned was that as those with Savant skills became more connected with the world their savant skills often diminish.

Not sure if it is the same but that kid in California doesn't seem to have that synethesia as much anymore as she has gotten older and learned more skills. She still has it but I think it has faded or perhaps she has learned how to turn it off.

He could also read about Daniel Tammet.

[Carleen]

Sounds like Joe handled the discussion quite well. And who would have thought that a blog post would be the catalyst to opening up such an important dialogue? :)

I've not been so good myself and am just now catching up with reading but because today has been one filled with seizures, it's taking me a while as I have to read between them and the naps that follow. Have you gotten yours under control yet?

[One Sick Mother]

Renee,

I wonder... Is synesthesia considered a savant skill or it is a separate thing?

Yes. I mentioned Daniel Tammet to him -I have his book. But Joe is not that interested. He wants to find someone who has the *same* version that he has -i.e. emotion--> color.

..and speaking of Daniel Tammet, I don't think his synesthesia faded as he learned skills...?

Tell the kid in California I said hi. (and maybe she just doesn't talk about it as much anymore?)

hmmmm?

Carleen,

Time will tell. Joe will take awhile to process all of this and when we will see, but his initial response looked good. He *could* have freaked!

Seizure activity has spiked again wth me too recently (hot weather?). Control...? HA!

I hope you feel better soon.

OSM

[Renee]

OSM,

I don't think synethesia is a savant skill but both the spectrum kids here have (or had) some strong splinter skills that near savant at times or did. The older one, again, not so much anymore. But the younger since taking up piano is definitely showing some incredible skills in that area. Always knew he would be great with music. Funny thing is since taking up piano and becoming so focused on it the other OCD traits are through the roof and he is starting to talk about things being in color. Haven't paid that much attention cause I don't know if he is just copying sis.

The boy is huge on power of suggestion so if you mention something like Daniel Tammet and his quirks he focuses on them so much that he believes they become his as well. I don't know if he is "imagining" it or if it is real. I know it is real to him but as you know he is one quirky fellow.

[Lisa Moon]

What a neat journey this has been! It sounds like this can really help Joe come into his own, to be proud of himself.

I have an adult friend with synesthesia; he is an artist, self-taught... paints, does photography. Adores music... I love to hear him describe how he experiences things. So beautiful to me.

It would be very interesting to have BOTH of you experiment with that! You said you can't paint, I believe, but I think it's something that you need not necessarily learn the 'right' ways of doing things, but rather play a bit and see what happens. You never know - perhaps either or both of you might really find something you love to do and what a wonderful form of expression.

With Joe's colour understanding of others' emotions, I can't help but find that fascinating. When people speak of those on the Spectrum, it's often cited that their inability to understand body language, etc. is this huge deficit... and this just sounds to me like another way of understanding!

I'm so glad that you're open to and encouraging of his experiences. I think everyone can learn a lot by being open to ways of understanding, learning and perception which are different from what we assume everyone else sees/hears/feels!

[yanub]

I'm happy to know that Joe feels less alone after learning that Carapace also has synasthesia, even if it isn't exactly the same. How interesting that he tried to duplicate her experiences!