Tag Archives: wisdom

A Letter To You ~ By Emma

I asked Emma whether she wanted to finish the story she began about an otter or talk about something else.  She wrote:

“I want to talk about the New Year.

“This is a meaningful year because I am beginning to write about my ideas about autism and how people need an education in applying what Autistic people feel.

“Fear is non-living.  It cripples the mind and deadens the soul.  Raging beasts of pain masquerading as stims cause many to misunderstand.

“I am not without thought.  My forever beautiful mind needs nourishment all the time.  Autistic people are left to linger in a secluded world by those who could be helping instead of harming them.

“Please care enough to alter how you interact with those who may seem different than you, but who are actually the same.  We are all beings with similar feelings and hopes.

“Do not believe your fears.  They will lead you the wrong way.”

Emma told me she wanted me to publish this on the blog today.  Emma turns twelve this month.  I have spent more than fifty years learning what she already knows.  Em & Ariane on New Year's Eve ~ 2013    Em & Ariane on New Year’s Eve ~ 2013

 

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

“Be Nice To Each Other”

Be nice to each other” – this was the final sentence Emma wrote to Soma on Friday before we flew back home.  She wrote it in answer to Soma’s question, “Any message to the world?  To mankind?”

Be nice to each other.

We returned home late Friday night.  I was riding on a cloud of excitement, newly found realizations, solid, unequivocal confirmation and proof that not only is Emma completely aware of her surroundings, but she has profoundly wise insights into the world, other people and herself.  She is one brilliant girl.  She has managed to learn despite having almost no formal education, she knows her multiplication tables as though she’d been studying them for years.  She knows how to solve mathematical word problems, she understands things I have only come to understand very recently and her compassion for others is astonishing.  She has been spoken harshly about.  She has heard what others have said about her in front of her as though she could not hear or understand.  She knows what others think of her, and yet, she understands these things are said in ignorance.

So excited was I, that I slept fitfully, and Saturday morning awoke to blinding, crushing, devastating sadness.  I felt the weight, the enormity of my daughter’s life and my role in all that has happened to her these past nine years since she was diagnosed.  My mind latched on to each and every misstep, the mistakes piled up so quickly, one on top of the other I felt I couldn’t breathe.  I spent Saturday in a state of crisis.  I completely broke down.  And the thought that continued to blast in my mind was, “How will I ever find my way out?  How can I forgive myself for what I’ve done?  How does one forgive another who has made the decisions I’ve made?  In essence, how can you forgive what is unforgivable? And yet, she has.  And therefore, so must I.

Be nice to each other.

And here is the thing about all of this.  Berating myself, hating myself, NOT forgiving myself allows me to continue the cycle.  It wears me down, threatens to break me when I need to be strong.  But I also know that when I am overwhelmed with feelings, telling myself that I must not feel the things I am feeling, does not make them go away.  Tamping the feelings down, pretending they do not exist, none of that actually helps me move through them.  Criticizing myself for hating myself does not make me hate any less.  And so I accepted that this was where I was.  And for one day I sat with all those awful, painful feelings and felt them.  Neither pushing them away or adding to them by criticizing myself for having them.  I sat with them one excruciating hour after the next and allowed them to be.  And all the while I repeated Emma’s words, Be nice to each other. And I allowed that to include myself.  By Sunday morning I felt my strength returning.  I felt that old determination returning.  I could feel energy flowing and I knew.  I knew.  As long as Emma gives me permission to, I will tell all who will listen, at least some of what she is writing.

When I asked Emma yesterday if I could write today’s post using her words as the title she nodded her head, yes, and smiled.  Last night before going to sleep she said, “Mommy?  No school tomorrow?  I don’t like new school.”  And so I promised her, I promised I would do everything in my power to help her school understand, but I know I have one hell of a battle before me.  And I need every ounce of strength I’ve got in me.  But maybe, just maybe some of the video clips I have of Emma writing these things will have the power to change even a few minds so that they will be swayed and will come to understand what I have.  Not only is my daughter capable, she has a great deal to teach us, but all of that will be lost if we are not willing to open our minds and listen.  This is the non autistic limitation of our neurology.  This is our neurological deficit and we will have to work mightily to change that.

Emma at Halo – September 26th, 2013

Em iPad copy