Wading into the world takes achingly long when comparing the expectation with the reality. Vibrant expectations swirl and dance a tempting flurry of ease and take no time to build the skills needed in real life. Disappointment embraces ecstatic expectation when stories walk along a more difficult path. Finding the wonder and natural tempo in working to achieve shimmers and eventually outlasts fleeting expectation.
Posted in Autism, autistic, body/mind disconnect
Tagged Autism, autistic, challenges, communication, comparing, difficulty, expectation, expectations, life, poetry, reality, skill building, typing to communicate
This is a story about a teen girl chasing a dream to be a singer, despite being unable to talk…
The first time she heard a voice being used as an instrument, was the day she would mark as euphoric. How hard able bodied people have to work to make their visions come to life, caused her to doubt whether she could dare to desire such a career for herself. Speaking was almost impossible though she was given the tools to sing words by hitting letters on a keyboard. She knew with determination, practice and patience she could, at least, try. A challenge she embraced and will tackle greedily.
Easy and challenge are not friends, but joy and challenge can be.
Find joy in challenges and life changes.
Emma Singing
Posted in Autism, autistic, Teens
Tagged career, challenges, communication, dare to dream, dreams, hard work, joy, Performing, RPM, singing, spoken words, Typing, typing to communicate, unreliable speaker
“Actions taken that get responses you don’t want.”
This was what Emma typed in response to my question, what should we write about on the blog today?
Emma proposed making one blog entry a week, possibly asking for readers to answer some of her questions, but before we could continue, she had a few concerns.
“Would thinking about stressful times cause upset?” she typed.
I said that it might, but we could put a trigger warning above with the topic so that if the topic was something specific, people would be warned and could stop reading. As I said this to her I marveled at her endless compassion and concern for other people’s feelings. Then I said I believed that sometimes it can be helpful to know you aren’t alone in feeling and thinking things that you don’t necessarily know others feel and think, at least this has been my experience.
We discussed the experience of going through puberty and how adults will often talk about their children and what they believe they are going through, but not about their own experience of going through puberty. “Maybe we should ask people to share their memory of puberty and what was the most difficult part about that period of their life?” I suggested.
Emma wrote, “You can ask and please say that if this question causes stress to not answer and next week I will ask a fun question.”
“That is such a thoughtful and kind thing to say, Emma,” I told her.
Before we ask for other people to share their experiences with either of these questions, Emma and I asked Richard to talk about “actions taken that get responses you don’t want.”
Richard said, “I put work out into the world, like my book and I want people to enjoy it, but some people say all kinds of nasty things, or let’s say I wrote a blog post and my intention is to be helpful to Autistic people and advocate for them, but because I’m not Autistic and I am highly opinionated, maybe I write things that are actually offensive to the very people I’ve meant to help.”
I asked Richard if this had really happened to him or if the last part was hypothetical.
“It’s hypothetical, but I certainly am capable of doing something like that. People can do all kinds of things with good intentions that don’t get great responses. To me the question is – what if you do things that you think are going to be helpful to yourself and other people and they aren’t and they aren’t appreciated either.”
I told Emma I would write about my experience with both these questions, so beginning with the first – actions taken that get responses you don’t want.
Saying something that is taken in a way I didn’t mean, particularly if it causes upset, anger or comes across as offensive. There have been times when I’ve said something and not realized it was offensive until much later, but there have been other times when I’ve said something or asked a question and it’s been taken as meaning more than simply information gathering.
Puberty…
One of the things I really love about this question is that it’s one of those topics people don’t often talk about, at least not with any personal specifics unless it’s about someone else (often without that person’s permission) or in small groups. So here’s the trigger warning – if the topic of puberty causes you stress, stop reading, otherwise, please join in and share a memory or an experience of going through puberty. What was it like? What was most challenging? Please keep this about your own experience. If you want to remain anonymous, you can always send your comment to the blog email address: emmashopeblog@gmail.com or you can DM us on Emma’s Hope Book Facebook page.
We asked Richard to start things off: (insert smiley face here)
“It was the late sixties and early seventies and I became obsessed with – when will I have cool looking sideburns? – I remember doing drawings of sideburns and imagining what my sideburns could look like. I remember a lot of thinking about sideburns. They were emblematic of becoming a man.”
Okay, so I can’t really ask readers to share if I’m not willing to do the same, so here goes:
One of the more troubling memories I have of puberty was when I began to develop breasts and wanting to have them because most of the girls in my class already did and I was taunted by the boys at my school for not having any breasts. They would yell, “hey flatsy!” at me when they passed me in the hallway or whisper it to me during recess.
But I also hated that I was developing them. I had both feelings at once. There was shame about my body for not looking like the other girls, but also fear and shame that I would. I remember lying on my stomach at night, thinking this might limit or reduce their growth, only to put small wads of kleenex in my “training” bra to see what I would look like once I had them.
The larger issue, though I don’t think I was aware of it at the time, was the conflict of growing older and being excited by this, yet part of me wanted to stay a kid. And there was terror too. I was going to say “fear,” but it was more than fear, it was real terror at the idea of looking more adult like and less kid like, coupled with growing into a woman’s body and not liking the attention that elicited, which interestingly enough ties this answer to Emma’s first question about – “actions taken that get responses you don’t want” and very much encapsulates the essence of all that was problematic and difficult for me about puberty.
We’re turning these questions over to all of you now…
1. Actions taken that get responses you don’t want
2. Puberty – what was your experience or a memory of that time in your life?
Posted in Autism, Parenting, puberty
Tagged actions, aging, autistic, challenges, childhood, compassion, developing, developing a woman's body, memory, Puberty, responses, Stress, upset
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!
Some of the instruments Emma chose for us to use in our “conversation.”
“Autism spectrum disorder (ASD) is a range of complex neurodevelopment disorders, characterized by social impairments” ~ NIH (National Institute of Neurological Disorders)
When I first learned about autism, as defined by many organizations, I understood it to be a “disorder,” with “social impairments” being one of its defining characteristics. As autism was also spoken of as meaning someone who did not and could not understand others, and that the very word “autism” stemming from the Greek word “autos” or “self”, suggested a person who had little interest in other people, I assumed this meant my child didn’t care about or want to make friends.
Add to this the unfortunate wording of what so many of our kids engage in – “self stimulation” – which to my ears anyway sounded vaguely masturbatory, and as we live in a society tending toward the puritanical, self stimulation, even to my liberal notions, carried with it a decidedly negative connotation. The word “stimming” is a bit better, but even so, I cannot get away from the sense that this feeds into those negative assumptions about intent and a lack of interest in connecting with others, which is still believed by a great many.
When my daughter described stimming as “self-care” (you can read that post ‘here‘) I was filled with admiration. Self care is such a wonderful way to describe what I see her doing. Self care is not about rejecting others, but instead describes a way of regulating oneself so that one can engage with others. This idea that autism means disinterest in other people, an idea so many have embraced, does not describe my daughter at all. To the contrary, my daughter and so many of my friends who share her neurology care deeply and take tremendous pleasure in their various relationships, just as those who are not autistic do. (That this last sentence is even necessary to write, demonstrates how far we have to go.)
This idea that autism characterized by “social impairments” is something that drives me crazy. It isn’t a social impairment. It’s a complete misrepresentation and misunderstanding of what autism means to those whose neurology is called autistic. My daughter does not lack a desire for friendship or have a disinterest in other people. Unable to often communicate what she intends, constantly distracted by things others cannot and do not necessarily see, hear or feel and a need to move her body in ways others misinterpret, it is no wonder “friendships” present a whole series of issues for her.
So many of the assumptions about autism, based on what non autistic people witness and believe they are seeing and the theories they then develop supporting these assumptions continues. Assumptions, spoken of as though fact, with therapies devised to “help” what is assumed to be true and yet, is not, is based on a false premise. But when we were given Emma’s diagnosis, I did not question these various theories. I, as did so many others, took them at face value, believing that though there was much we still did not know about autism, these beliefs at least, were some of the things we DID know about autism and by extension autistic people.
Oh how wrong I was…
Emma holding Teddy With her String
Posted in Autism, friendship, Parenting
Tagged Autism spectrum disorder, autistic, autistic behavior, challenges, communication, disorder, impairments, language, National Institute of Neurological Disorders, neurodevelopment, Neurology, self-stimulation, sensory issues, social impairment, Speech, Stimming
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