More Insights From Emma

My entire routine has been so thoroughly disrupted these past three weeks that this blog has suffered the consequences.  There’s simply too much going on, not in a bad way necessarily, but more than I have been able to keep up with.  But today…   Today both kids are out skiing and I have a few hours to write.

Emma has been writing a great deal.  In fact Emma wrote three stories as Christmas presents to her granma, her Uncle and Aunt and her dad.  Each one is beautiful and poignant and kind of over the top amazing in its complexity and layered meaning.  I transcribed the one for her granma ‘here‘.  In the story to her Uncle and Aunt, the final sentence was, “No words need to be used to hear love.”  Think about that for a second…  This kind of insight shows a level of sophistication and poetic understanding of the world few adults have managed to appreciate, let alone, express.   Emma is eleven years old.

In the story for her dad she wrote about a  daughter who, “Daily she tried to communicate her love for her family, but her words came out of her mouth wrong.  In day after day conversation she was misunderstood.  Finally she began to write on a stencil board and the words came out right.”  I am quoting this here because this is exactly the sort of thing so many of us get hung up on.  How many times have we seen or heard parents talk about their distress because their child is not able to say those three words, “I love you”?  How many times did I once, not so long ago, lament that my child had not ever said those words without being prompted to?  How often did I wonder and question her love?  And now…  now I wonder why and how could I have ever questioned those feelings?  How was it possible that I ever doubted her?  I say this lovingly and with tremendous compassion for all who have ever wondered this about their child.  We are being given incorrect information about autism and our children.  But I wonder if I would be so certain if my daughter were not writing and telling me the things that she is.

As I’ve stated before, writing is hard work for Emma and even though all of us, who receive her words, feel incredibly grateful to read anything she writes, it is difficult for Emma to express herself even in writing.  I say this as much as a reminder to myself as to inform those who may not fully appreciate how hard it is for her.  Often, when people hear that Emma is writing, and writing some pretty profound insights about the world, herself and autism, they will say, “but why not just give her an iPad or let her write on a computer?”  And then I must try to find the best words to explain.  It isn’t that easy or that simple, if it were, she would have begun writing a long time ago.

I’ve described before the process ‘here‘ and ‘here‘ that Emma uses to write, one letter pointed to at a time, on a stencil board, while a trusted person transcribes each letter or word one by one.  I have worked with Emma since the end of September almost daily and am now one of the people she can and does write with, to express herself.  She is incredibly generous in her willingness to allow me to quote her and almost always gives me permission to quote her on this blog, something I am doing more and more frequently!

This morning I talked to her about skiing with a ski pro, asking whether she’d like me to ski too.  She told me she preferred that I did not come too, and when I asked what, if anything, she wanted me to tell the ski instructor, she wrote about how she wanted to eat lunch early and then wrote, “Have to understand my mind talks heavy thoughts, but my mouth talks silliness.”   I asked her what she advised and she wrote, “Try to be patient and do not over rate talking to each other.”

A message we talkers would do well to appreciate and try our best to implement.

Emma’s Eyes ~ A Self Portrait

Em

20 responses to “More Insights From Emma

  1. Thank you for the blog today! Emma’s profound understandings — and your sharing of them — mean so much to so many!

  2. ❤ this is beautiful! Thank you to you and Emma for your words and insight

  3. Emma is teaching us not only about herself, but also about ourselves. Thank you, Emma, for widening our narrow visions and helping us see a more beautiful world through your words.

  4. I so love reading your blog, Ariane. The compassion you have learnt, I dare say going through the dark to do so, (I’ve not done any catch-up reading of past posts), is so tender and touching to read/witness.

    I think I may be slightly Aspie (which is how I came to find this blog) and my nephew has SPD (which his parents and the clinicians/therapists who work with him say is not autism). But, I don’t care what label he has, I just enjoy and support him being him, as do his parents. In fact I love that he is so special. And I “get it” some of the things he does, so I feel a strong/stronger connection with him than if he was NT maybe…?

    Reading your blog supports and affirms that choice. Because in fact we are all unique and special and none of us fit exactly right in the world, so let the world mould itself to each of us.

  5. Ariane, when you said, “This kind of insight shows a level of sophistication and poetic understanding ” I felt prompted to thank you for creating that safe place around Emma, where she could thrive–not all of us have had that. When I started speaking age 31, I found that people didn’t want to hear anything out of me. I had been writing long hand scripts, stories and truths since I was 11, but even they were taken completely out of context by everyone around me–even those closest who should have been protecting my abilities and helping me to thrive.

    Yes, Emma, talking is not all its cracked up to be…sometimes I wonder why I ever put it as a goal for myself!

  6. this is beyond amazing, Emma is so awesome. These posts put a lift in my sails. Thank you, both of you for pouring out your hearts for others to soak up.

  7. Yes, talking is over rated. Also, I can talk and write. Both are tiring in different ways. Even after 10 publications and numerous short articles and blogs it takes much effort to use my computer to type out words fashioning them into sentences and paragraphs connecting the meanings of my thoughts in a way people will accept. It is laborious but ever so demanded by the world in order to be contemplated as a possible human being. Some days the world grades me better than other days, but mostly I am happy to be counted human more often than not these days. The being counted as human is the starting point from which others contemplate allowing my words meaning to their ears, validity to their minds and impact on their souls. As autistic we must first prove our humanness by passing the validity test of the world which involves looking, acting, and talking – or at least writing (preferably like they write – independently and quickly) before our words might be contemplated. I don’t think I will live long enough to see this change but hope it will in Emma’s lifetime.

    • (((Judy))) Thank you for taking the time to leave this comment here. I so appreciate you, your art, your words… Perhaps one day people will understand that in order for all of us to have humanity we must embrace the beings that make up the human race.

  8. I just said something along these lines to my mom last night…E is 4 and already showing his intelligence…but where would he be now if…if I had listened to all the misinformation? If I had never found a way to get him into electronics (first smart phone then ipad), if i had never found this brave community of autistic ppl willing to answer our (im sure sometimes to them) idiotic questions over and over?

    Before he started playing educational games and using flash card apps (to put together words with pictures) before our somewhat failed attempts at pictures and signs…before his talker…(keep in mind this is also a progression from age 2-4 dx being at 3) we had no idea whatsoever if he really understood anything besides one or two words. Now, by watching him play on the ipad, and presuming competence we know that he has known letters, colors, shapes, and numbers for quite some time now. With simple prompting (he still prefers to drag us around the house) he can use his talker to tell us what he wants to eat and drink, what he wants to do, and if he needs changed.

    Point being…he will never be NT and thats just fine but he is learning, growing, and communicating…and thinking of that made me think…what if we followed the mainstream ideas and protocol and information…would he still have come as far as he has? Maybe…but would anyone around him have the slightest clue?

    • It is still a frustratingly slow process getting others up to speed, or at least this has been my personal experience.
      Good for you for not going along with any of what you were being told! I’m sure your child has only benefitted.

  9. So profoundly poetic; we all have a lot to learn from Emma. Thank you so much for sharing it Ariane and thank you Emma.

  10. booksonaspergersyndrome

    She’s quite the little author. so many people on the spectrum like to write stories/books/poems/whatever. and just because a child cant say the words I love you doesnt mean she doesnt feel it. obviously, she feels it deeply but cant say it. some forms of communications go beyond words.

  11. Wow!! Just Wow. I can’t find the words to describe the effect this is having on me… Wow!

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