Poetry is ballet in words.
Graceful, agile words, yawning and leaping while whispering and shouting all at once.
The ending is the beginning
like water colors
I had no access to any of it
no way to share the beauty
alone
the dance
with no one to answer or interact
I was alone in the intense happiness
but now
I can choose to dance with others
when I want.
Posted in Autism, autistic, communication
Tagged alone, ballet, Communicating, dance, happiness, joy, non-speaking, poetry, speaking, together, Typing, unreliable speaker, Words, writing
Seeds there
Virulent shoots hamper process
ingrates they throw everything into chaos,
disruptive and noisy I shout the same thought
weeding out the bad from the stillness.
Whispering calm directives – keep it cool, Emma –
but the thrashing divas hold the spotlight and won’t exit without a fight.
Timing is crucial.
Nobody can help bring order to the bothersome braying
that brutish tyrant who won’t allow others the time or space.
Patience is needed.
I am here
sometimes insistently so
but there is so much more to discover.
Years ago I wrote about the difficulties involved in writing a balanced and yet honest depiction of life. I just reread that post and my first response was to delete it. But as I no longer do things on this blog without asking Emma, I asked her if she wanted me to remove it and others like it. She wrote, “no.” So I’m leaving it, though, for the record, if this were left entirely up to me, I would delete it, along with a great many others where I detail personal things about my daughter without thinking about how she might feel having such information made public. To be honest, I would delete the first two and a half years of this blog, just wipe the slate clean and begin with the spring of 2012 when I began to become aware of Autistic people who were writing about their lives. But this blog is not mine alone. This blog is a group blog, written by three people, one of whom has their name featured on it, Emma. (Emma has said she likes the name of the blog and does not want it changed.)
A blog is a curated version of life. We tell what we are comfortable discussing, what we are aware of and understand at the time of writing. But when writing about others, particularly family members, things get trickier. Even a year ago I wrote things I am not comfortable with, but as Emma wrote a few weeks ago, “it’s important to show that times were difficult. It is still not easy at all times.” Emma wrote this regarding another project, but when I asked her if her statement applied to this blog too, she wrote, “Yes.”
My dilemma in continuing to contribute to this blog concerns that difficult balancing act of writing about the things I am learning, processing and thinking about, while being respectful of other members of my family and not writing in a way that suggests I speak for them. Even so, I am not always successful. But more and more there’s a great deal I don’t write about. If Emma is going through something that causes her pain, I no longer feel comfortable writing about it, even from my perspective unless she asks me to. I argue that a certain amount of self censorship, particularly when done to protect the confidences and security of others, is not necessarily a bad thing.
The only time I’ve posted things that are personal and painful are when Emma has written, “Put this on the blog.” Or when I’ve asked her, “What do you want to talk about?” And her response was, “I want to write a blog post.” But these omissions, this version of life that I do feel comfortable enough to discuss here, cannot, by their very nature, give a true picture of our lives. So for some, it may seem our lives are ideal, or some readers may mistakenly think we never struggle, or perhaps these posts give the impression that we live a pain-free life of nothing but joy and ease.
Blogging is an intimate and immediate form of writing. Those of us who blog are far more available to those who read what we write than other people who write. Anyone can make comments and most bloggers, even those who do not or rarely respond to comments, read what commenters have to say. It is part of what makes blogging unique, and to me anyway, particularly compelling and interesting. Comments from others, whether they agree or not, are fascinating, often thought-provoking and some even make me reconsider what I believe or how I think about something.
Blogging is the reality TV version of writing. But even so, there is more left on the editing room floor than gets seen. It is the nature of the beast. Life is far too complex and messy, particularly when it is four lives or five, if one counts our mischievous kitty, to capture in 800 words or less, even when posting Monday through Friday.
Posted in Autism, Blogging, Parenting
Tagged Autism, autism blogs, autistic, Autistic child, balance, Bloggers, blogs, Communicating, honesty, joy, life, non-speaking, pain, Parenting, reality TV, suffering
Emma gave me permission to tell all of you what she would invent were she an inventor. *A little background – the quotes from Emma are what she spelled out by pointing to a letter, one letter at a time on a stenciled alphabet board. No one touches Emma as she does this. In fact there is no physical contact of any kind during the session, also known as an RPM (Rapid Prompting Method) session.
Emma has been doing RPM daily with me since the end of September. Within the past two weeks she has begun to answer open-ended questions with me. However the session I am going to write about was with someone who was trained by Soma Mukhopadhyay (the creator of RPM) and whom she is now seeing a couple of times a week. This person, who I have not asked permission to print her name and so will refer to as B, has been doing RPM for a while now and as a result is able to move far more quickly into open-ended questions than I am.
In their previous session they had discussed train engines. At the end of their session B asked Emma to think about what she might invent were she an inventor. When Emma returned for her next session they began with the question, “What would you think was a really great thing to invent?”
Emma then replied, “Let me tell you that it is not a train engine.”
I have to interject here… I love how ballsy my daughter is. I love that she didn’t just answer with one word. I love how audacious, cocky even her answer was… “Let me tell you…” Emma spells words out, and I sit watching, literally on the edge of my chair, waiting, wondering what wonderful words will she write? “Let me tell you…” YES! I cannot wait to hear what you have to say!!!!!
Emma continued, “It is more from the future…”
B urged her to tell us more.
“It is a spaceship.”
For all who know my husband this answer has brought a smile to your face. For those of you who do not, let’s just say he has a particular fascination with spaceships, UFO sightings, etc. He has logged in many an hour watching YouTube clips of various sightings. As I sat watching my daughter spelling out these words I kept thinking how much Richard was going to LOVE hearing about this session. But there’s more…
B encouraged Emma to continue, asking her to tell us more about the spaceship she would invent.
Emma spelled out, “Have you ever seen spaceships in New York?”
Sorry, I have to interject again. This question… this question is wonderful and defies all that is commonly thought about so many of our kids who cannot verbalize questions like this. For all those parents who have never had their child ask a question, for all who have bought into this idea of Autistic self involvement, of a lack of interest in others, this thought that our children who are non-speaking or unreliable speakers are “caught” or “lost” in some other world… to all of you, I suggest we rethink these ideas. My daughter is not the only one writing things like this, she is one of many, many children, teenagers and adults who cannot voice their thoughts, but are writing them. I have watched her, time and time again, asking questions; this kind of engaged conversing goes against everything we are taught and being told about non-speaking/unreliably speaking autistic people.
B answered Emma’s question saying that she had not seen a spaceship in New York City. She said she’d seen a great many different types of transportation in New York City, but never a spaceship, to which Emma then wrote, “You never have to wait to go anywhere.”
B then asked her how you could get a spaceship and Emma wrote, “You buy it on your own or you get a monthly pass.” (In New York City most of us take advantage of the terrific subway system. To use the subway you need a “Metrocard” which you can purchase for a single ride, multiple rides or for those who commute daily a monthly card of unlimited rides.)
B observed that as parking in New York City is already limited she wondered where a spaceship would go. Emma wrote, “No parking needed. Once they have landed they become invisible.”
B then asked her, “How do you call for one?”
Emma wrote, “You have a button to press and it arrives right away.”
“Let me tell you…”
Emma's Hope Book 