This morning I had an idea, which turned out to be something I thought was a good idea, only to find that what might seem like a good idea to me, is not necessarily a good idea to my daughter, and the reasons why were not something that ever occurred to me.
I am continually surprised by the insights Emma, so patiently, gives me and am reminded again and again that my assumptions limit my views. Thank you Emma for giving me permission to post our conversation.
Ariane: I thought we could begin the day by discussing who you might like to interview and about what topic?
Emma: Is the way here, thinking, knowing, and asking about another, helpful?
Ariane: I think it’s interesting and certainly can be helpful to get to know other people’s experiences of life. Asking is a great way to understand another’s perspective. Who would you like to interview?
Emma: Using questions to sing truths meaningfully speaks to all.
Ariane: That’s so true! Music is a universal language that can transcend words.
Emma: What did those we cannot ask, say?
Ariane: Who are you thinking of, Emma?
Emma: Those who cannot speak and have no one who believes in their ability to communicate in other ways.
Ariane: Here’s the thing though, we can ask. We may not get an answer we understand, but we can still ask and I think that’s the beginning, right? We ask anyway and then do everything we can to understand the answer, even if it’s not in spoken language or in ways we understand at first.
Emma: Understanding that all human beings want connection is natural and fundamentally human.
Ariane: I agree. So Em, what was it like before you were able to type?
Emma: Days bloated with tears, frustration, anxiety and raging questions that only made daily living harder.
Ariane: Ah… can you tell me more?
Emma: Thinking and wanting to ask questions, but knowing the words would come out wrong was too painful, best to silence asking than to be in the smothering feelings of tremendous frustration.
Ariane: I imagine interviewing someone must be hard, even now that you can type. Would you say that’s true?
Emma: Sometimes ease is not an option.
Ariane: You do not need to ask any questions unless you choose to, Emma, I wasn’t considering any of this when I first introduced the idea. I’m sorry. What else should we do right now?
Emma: How about a conversation using music and no words?
Ariane: Great idea!
I think it is especially frustrating for both of us right now. . He is using more verbal speech and I know he is purposefully saying something because he repeats it but I… just. . Can’t. .. figure. . It. .. out. Even when I think I do I have no way to confirm and the sound of the day can mean the obvious or multiple things depending on context or inflection. I just wish my brain would catch up and I could somehow telepathically understand. The talker is still limited to requests for diapers and snacks even yes/no “appears” to be echolailic and rarely used. Frustration ensues to know there are a multitude of thoughts in there he will communicate when able but patience is not my particular virtue Lol
Patience isn’t mine either, thankfully our children seem to have much more and wait for us. I’m guessing your son will wait for you too.
I hope so
Not only is an interview difficult for Emma, it could be difficult/painful/frustrating for the people she would like to interview.
Ariane… I think perhaps you and the “interview” have just been interviewed! ❤ Love to you and Emma
Ha! It did feel like the idea kind of folded in on itself…
This is strikingly reminiscent of a Zen koan: “What did those we cannot ask, say?” I’m going to carry it with me today, I think.
Yes, I really loved reading that as she typed it. Hence Richard’s nickname for Em – Dolly Lama.
Every day here is more insight into my son. Thank you Emma and Ariane!
Thank you so much for this blog and sharing your world. I get SO much out of each and every post and have more compassion and understanding from what is written. thank you
Her comment about “days bloated with tears” is so moving. Thanks for sharing.
The way Emma talks is incredible; I love reading her words. I wish I could communicate the way she does, with oceans of meaning! “How about a conversation with music and no words?” What a brilliant ending. Thanks for sharing, Emma and Ariane!
Music is so much better than words.