Category Archives: Autistic Blogs

How we Communicate – A Podcast

Posted on May 24, 2016 by | 43 comments

*This was an assignment for English Composition to create a podcast about something you care about.  This is mine after many revisions and incorporating notes from my teacher.  A written transcript of the podcast is below, but if you can, listen first!

 

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Emma – 2016  Photograph by Pete Thompson

This voice?  The one that you’re hearing read these words?  Yeah, that one.  It isn’t my voice.  It’s my mom’s.  You’re probably wondering why a teenage girl would want her mom to read what she’s written.  In my case, it’s because I can’t read what I write out loud.  There’s not a direct line between my brain and my mouth.  It’s more like an elaborate maze.  I can’t speak so people understand what I mean.  If asked a question, my mouth says things that do not answer the question.  My brain doesn’t think in words the way most people’s do.  Names of things and people get handed to me instead of the words that would make sense to the person questioning me.  Sometimes I blurt out whole sentences from another time in my life.  (Emma’s voice) “I bounce a balloon to Emma.  I bounce it back to me.”  They may be images that remind me of the person I’m with or where I am, or words I’ve heard spoken by others, things that get caught in my mind, or unrelated scripts, but that convey the exact emotion I’m feeling.  (Emma’s voice) “No more ice skating.  Ice skating’s gone.”  In any case, what I manage to say usually baffles the people I am speaking to, causing them to misunderstand me.  Not being able to speak what’s in my heart so that others are able to understand can be challenging, but I can type things that I cannot reliably say.  There are computer generated voices that say the letters as I type them and sound like this – (Computerized young girl’s voice) “I am your friendly computerized female voice.  I sound like I’m maybe five years old.”  (Another computerized young girl’s voice) “Or I can sound like this and pretend I’m British.  But yeah, it’s just not me.”  Or I can sound like this.  Okay it’s not my voice, but with some direction, Mom sounds better than a computer.

Imagine for a minute that you can’t talk to people in any way that makes sense to them or you.  Imagine if every time you opened your mouth to speak other words tumbled out.  If you are like me, you might get used to not answering people’s questions or being able to stay on topic.  So what would you do?  How would you interact with people?  Would you ignore their questions?  Pretend you didn’t hear them?  How would you express yourself?  Maybe you would try to connect with scripts you’ve memorized, things you’ve heard other people say in similar situations or maybe you’d find non-word based ways to communicate.  That’s what I do.

(Sound of footsteps, people talking and the subway)

Sound is everywhere.  I don’t have a filtering system marking one particular sound as more important than another.  Can you understand what I’m saying right now?  Mom had to raise the volume of her voice so that you could hear it above all the other noise.  My brain doesn’t do that.  It hears all sounds equally and does not discriminate.  But some people’s voices are not as dramatic to my ear as the honking of a horn.  I love the sound of honking horns.  (Horns honking and traffic noise)  Favoring some sounds dilutes others, but music has the best sounds of all.  (Body Knows Best – Anya Marina)

Music is my first language.  It is a friend who loves me unconditionally.  It’s there when I need it and does not shed a tear if ignored for some time.  Music is a positive force as it stands by my side.  I like hearing the same melodies repeated and did so even when I was very young.  It’s been a comfort to me as long as I can remember.  Music grounds me and plays a huge role in seeking my creativity as it allows me to perform as I choose to.  It’s a way to communicate; it gives me hope, tells me I am not alone and inspires me to create.  Though people respond differently to music, I believe there are always emotions involved. Music has the ability to transform my fearsome thoughts laden with anxiety and stress.  (Music fades out)  It calms me and this has been the case throughout my life.  When singing lyrics I stumble and have trouble articulating the words, (Lose Yourself – Eminem) but I can remember the sounds I hear and recreate them with my voice.  When I sing I am not apart from, but instead am part of.

Music can be both private and public, but it needs to be loud.  (Music gets louder) No one composes music in a whisper.  My body needs to feel the beat so that I can be consumed by it.  (Volume increases steadily and then fades)  When that happens I become part of the music, like another instrument or an extension of it.  I jump and dance and move.  My arms swing or are raised up and my head bops, my whole body keeps time to the beat.  I’m transported to another reality and it is in this alternate reality that I am most happy and comfortable.

At home my need for high volume can cause problems because the members of my family have differing sensory needs that come in direct conflict with mine.  (Heartless – Kanye West) My older brother has to have music as background, while I perform alongside, so it makes sense for mine to be public and his to be private.

(Emma’s brother)  “Yeah I think it’s totally fair that you’re able to use the living room.  It’s not like you play bad music or anything.  If you played music I didn’t really like, I’ll just shut the door and go in my room and hang out.”

My mom and dad both work at home and need quiet in order to concentrate.  I am told to wear headphones, which encumber my movement and dilute my experience.  My family has worked out a solution that allows me to commandeer the living room in the evening.  For several hours I am blissfully able to indulge my love of loud music and dancing while my brother stays in his room or hangs out with my parents in theirs.

Until about a year ago I didn’t know the joy of creating music.  Until then I was an audience member, but not a participant.  My parents encouraged my love of music and hired teachers to help me expand my interests.  Guitar is beautiful to listen to, but it is difficult for my fingers to recreate the sounds flowing through my mind.  Piano is also hard and requires dedication and lots of practice, but I think it’s a better fit for me.  Singing is easy and my lack of inhibitions, great sense of tone and ability to mimic sounds I hear makes it the best choice of all.   Eliot is my piano teacher and Karen is my singing coach.  Eliot came first.

(Eliot) “Emma has a great ear.  She can learn to sing new melodies really quickly and accurately.  Recently she’s been listening to the car horns outside and sings their exact pitch.  Emma is a fun, expressive and creative singer/performer.  She brings a lot of life, passion and feel to the material.”

Karen came next.

(Karen) “Emma has really great pitch control.  She knows exactly how the melodies go whether she knows the words or not and she makes it a real point to study each specific thing that happens in the song and can honor each thing in the song by movement and she can also emulate the sound really well as far as consonants and vowels.”  

(Gimme Resurrection – Anya Marina) Karen and I have great fun together.  I feel at ease in her presence, which is important when you are learning new things and trying to be creative.

Eliot and Karen have taught me to be patient with myself.  From them I have learned how hard it is to become masterful and yet I’ve decided it’s better to love the process of learning as much as the final product.  Communicating isn’t just talking, it’s developing a connection with another.  Music connects us all.  I wrote these lyrics and composed this melody, so this voice?  Yeah, this one’s mine.

Emma sings Over and Coming
Eliot Krimsky on keyboard

The girl’s going in the bed
the girl is going inside
the girl is going outside.

Who is this girl I see?
Who is that girl I see?
Watch careful-ee-ee-ey
Listen to me-ee-ee

Over and coming and over and coming,
over and coming and over and coming

Go, go, go,
go, go, go,
go, go, go, go

Go, go, go,
go, go, go,
go, go, go, go

Find a way
to seize the day
Dare to be the leading girl!

The girl walks out the door
the girl walks in the door
the girl is a teenager.

I am the girl you see,
I am this girl you see,
Do you believe in me?
Please do believe in me.

I’m ready to fly if you let me,
I’ll go
Turn up the music and
just don’t say no.

Starting and going and starting and going
starting and going and starting and going
Starting and going

Do, do, do, do, do, do….

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Posted in anxiety, Autism, autistic, Autistic Blogs, Autistic communication, Blogs By Autistics, body/mind disconnect, communication, conversation, disability, Echolalia, inclusion, language, music, neurodiversity, perseverative speech, presume competence, reading, reading & writing, saying one thing meaning another, scripting, self-advocacy, sensory issues, special needs, Speech, typing, typing to communicate, unreliable speaker

Time To Dance

Posted on March 24, 2015 by | 12 comments

Hearing music alleviates anxiety and welcomes dappled drops clasping gleeful feelings, radiating inward and outward simultaneously.  Like bursts of intense flavor, music explodes in the body.  Only a few stoic souls can ignore its command to move.  Dancing is the healthy choice.  Turn on your favorite music and give yourself permission to become a part of those notes.

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Pathologizing Autism? Let’s Discuss.

Posted on June 16, 2014 by | 30 comments

People argue that we have to pathologize autism because if we do not, families and Autistic people cannot obtain much needed services.  People say that it is one of those unfortunate things, but given the confines of our system, it’s the way it works.  People say that those who argue against the medical model for autism are not considering those who are more profoundly affected by their autism, those who require 24 hour care and assistance, people whose bodies cannot and do not do what their brains tell them, so much so that they cannot live without daily support.

I would love feedback and links from those who are Autistic favoring a shift away from pathologizing language and your reasons why.  I am particularly interested in hearing from those who are themselves, or who discuss people who are, in need of round the clock care.  If you have written about this, or have read anything about this, please send links.

Things people say, that I’d like thoughts on –

The medical model has its place and is needed to get services.

If we do not pathologize how will the people who require assistance receive it?

Any and all arguments and specific reasons why pathologizing autism is harmful.  Are there any studies showing the direct links to pathology language and harm and abuse of the people who are being pathologized?

What are the psychological repercussions of pathologizing autism?  Personal experience would be great!  (If you prefer to keep this confidential, email me at emmashopeblog@gmail.com.)  I will only share content from those who comment here or who tell me in private that I may do so.

A fantastic blog I refer to often and have reread countless times, is Nick Walker’s blog – Neurocosmopolitan, so no one need send me links to Nick’s work.  But for those of you who are unfamiliar with him, please, please read.  His blog is fairly new and has half a dozen posts, so it’s possible to read everything he’s posted in an hour or so, depending on how quickly you read.  I highly recommend doing so. (It took me a bit longer than an hour because I made notes along the way, as well as went to all the links he provided.)

DSM5

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Posted in Autism, Autistic Blogs, Autistic Role Models

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Ido Kedar’s Blog and Emma’s Response

Posted on June 10, 2014 by | 17 comments

I’ve written about Ido and his book and blog, both entitled Ido in Autismland, before, ‘here‘, ‘here‘, and ‘here,’ but want to devote today’s post to Ido’s latest blog post because Emma and I read his post this morning and Emma added some of her own thoughts to what Ido wrote.

Ido begins by talking about having just finished up his junior year at a non special education high school.  (I originally wrote “regular,” but then amended that because I no longer know what any of these words even mean, much less how derogatory they sound.)  Ido then addresses parents and then professionals and finally ends the post with a few encouraging words to other Autistic non-speakers.

After Emma and I read his post, I asked Emma what she thought.  She wrote, “I thought it was decidedly helpful to read Ido’s writing.  He tells strong truths lived.  Teaching wasted talkers about life not run on word fuel.”

“Word fuel.”  Can we just take a moment to fully appreciate that?  “Teaching wasted talkers about life not run on word fuel.”  There’s more, so I will disregard my urge to just end this post with that.

I asked Emma if she had anything she wanted to add to the paragraph he addresses to parents.  Emma wrote, “Parents – you must address your fears and doubts first, and then have caring words of encouragement for all word thinkers.”

I then asked for her thoughts on the paragraph addressed to “professionals”.  Emma wrote, “Teaching tedium does nothing, but water down ideas.  Lethargy is the lesson learned.”

“Lethargy is the lesson learned.”

Ido ends his post with a few words directed to Autistics like him.  Emma then wrote, “Work today, knowing each day pleases the necessary work of tomorrow.  Having hope, and loving, believing parents will make work easier.”

"Talkers"

“Talkers”

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A Living Amends & the Ripple Effect

Posted on April 18, 2014 by | 18 comments

Last night I was on Marc Rosen, Nick Hale and James P. Wagner’s blog talk radio show Human Potential.  You can listen to the show by clicking on the link provided.  The show focused on “The Importance of Allies.”  I was really honored to have been asked on the show, particularly given my past and the things I once believed about autism and my daughter.  I certainly did not begin this journey as an ally and so I am filled with a great deal of gratitude when told there are those who think of me as one now.

One of the things I forgot to mention last night as we talked, was this idea I’ve had ever since that day when I found Julia Bascom’s blog, Just Stimming, and specifically her post “The Obsessive Joy of Autism.”  It’s an idea I’ve tried hard to put into practice these past few years. The idea is that because I made so many really awful decisions about my daughter, I needed to make a “living amends” to her.

The idea of a living amends is that as long as I am alive the only true amends I can make that will have any lasting impact, that has any chance at countering at least some of the bad choices I made, is to do everything in my power now to live my life differently.  A living amends is different from an apology no matter how heartfelt that apology may be.  It is an ongoing commitment to change, to be open, to be willing, to have humility, to learn, and to behave differently as a result of this new-found awareness and commitment.  This is what I promised myself and my daughter just over two years ago when Julia’s blog opened my eyes to a different way of viewing my daughter’s neurology.

Since then I’ve had time to contemplate all of this and believe my role as Emma’s parent is to support her, encourage her, cheer her on and do everything in my power to make sure she feels empowered and supported to be all that she can be.  I do not ever want either of my children to be who they think I want them to be, or who anyone wants them to be, for that matter.  My job is to help them figure out who they want to be and then give them the support to help them be that person.

It is also this thinking that continues to drive me to do all I can to change how the world views autism.  I don’t mean that to sound as egotistical as some might take it. I do not expect, nor do I believe I have the power to change the world’s view, but I do believe each one of us can and does make change happen one person at a time.  There is a ripple effect that then occurs and that ripple effect repeated many times over does have the power to change what no single one of us can.  There is a saying – together we can do what neither one of us can do alone.  Or as Helen Keller is quoted as saying, “Alone we can do so little, together we can do so much.”

Julia Bascom’s blog is a perfect example of this.  How many, like me, were radically changed as a result of her words?  How many people then took her words and began to live their life differently?  How many then altered the lives of their children because they now presumed them competent?  How many?  I’m guessing the answer is more than just a few…  that’s the ripple effect in action!

Em & Ariane on New Year's Eve ~ 2013

Em & Ariane on New Year’s Eve ~ 2013

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Seeing Others Write To Communicate

Posted on March 28, 2014 by | 12 comments

I often think about that first time I saw someone who was unable to express themselves through spoken language, but who spoke through writing.  There is nothing quite like seeing to believe or at least to begin to believe what many of us have been told is impossible.   So I’ve compiled a few Youtube videos of different people who communicate the way Emma does.  A couple of them show people who have graduated from the laminated letter board and now type independently on a stationary keyboard.  This is our goal and what Emma is working toward.   For those who may feel someone holding a laminated letter board is cumbersome and suspect, please keep in mind the letter board is a stepping stone, which all hope will eventually lead to full independence.

The first video is of Ido who now types independently on a keyboard.  Ido’s blog is Ido in Autismland where, in a recent post, A Challenge to Autism Professionals, he wrote:

“The theories regarding autism have been based on observation of our odd behaviors. Lists of these behaviors make a diagnosis. I have limited independence in selfcare. I have limited eye contact. I have flat affect often. I can’t express my ideas verbally. I have poor fine motor control. I have impaired initiation. I have impaired gross motor control. I have difficulty controlling intense emotions. I have impulse control challenges and self stimulatory behavior.”

At the end of this terrific post he writes:

“Thousands of autistic people like me live life in isolation and loneliness, denied education, condemned to baby talk and high fives, and never able to express a thought. The price of assuming that nonverbal people with autism have impaired thinking is a high one to families and to people who live in solitary confinement within their own bodies. It is high time professionals rethought their theories.”

Ido wrote a book with the same title as his blog – Ido in Autismland.  I cannot recommend this book enough and have written about it before ‘here‘ and ‘here.’   It should be required reading for all parents with an Autistic child as well as anyone who is considering entering or is already in the field of special education and/or autism.

This second Youtube video is of a boy who writes a letter to his church.

Jackie Dorhurst is a speech/language pathologist shown here working with Gavin.  Jackie has an organization called RPM+ located in Wisconsin.

This next video is of my friend Sue Finnes’s son Chris.  Sue has a wealth of videos that she’s posted on Youtube over the years of Chris working with a number of people whom she’s trained to work with him.

And finally this video is of another independent typer, Mitch Helt who writes a letter to his aide.

This post was inspired by a comment from Ari,  who has a wonderful blog, Pixie Perceptions.  You are not alone Ari.  Doing all I can to make sure others realize this…

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Facing the Skeptics

Posted on November 12, 2013 by | 27 comments

It’s snowing.  In New York City.  Right now.

“Look Daddy!  It’s snowing!”  Em said this morning.

There’s nothing particularly spectacular about that comment, except to us, it’s not only spectacular, it is exciting and yet another example of how my husband and I continue to underestimate our child.  (This is less a criticism of us and more a statement of fact to illustrate a larger point.)

“Em, do you know who the president of the United States is?”

“Yes,” she spelled out.

“What is our president’s name?”  I asked.

“Barak Obama,” she spelled.

“Do you know our vice president’s name?” I asked, thinking this might be taking things too far.

“Yes,” she spelled again.

“What is the name of our vice president?” I asked.

“Biden,” she wrote matter-of-factly.

“Communication is the most essential use to which spelling should be devoted.  It should not be used as a test or an exhibition piece.  Try being confined to a sentence a week and see h ow you feel about using that sentence to answer some stupid question about whether you live in St. Nicholas.  If Rosie had spent all her time giving tests we would not have had time to use spelling for our own communication.  Crushing the personalities of speechless individuals is very easy: just make it impossible for them to communicate freely.” ~ Anne McDonald from the book Annie’s Coming Out

This is what we are striving toward.  Annie’s comment here is one I have read and reread and yet find so difficult to apply because I am in a near constant state of disbelief when it comes to all that my child is capable of.  I write often about presuming competence, I write about how we dehumanize Autistic people with the language that is commonly used to describe them.  I write about how important it is to treat all people as equal.  I talk about human rights and how the rights of those who are Autistic, particularly those who do not speak reliably or at all, are dismissed, ignored or simply not acknowledged.  And yet I underestimate my child’s ability constantly and without meaning to.

On a daily basis she writes something that blows my mind.  EVERY DAY.  Read that again.  Every.  Single. Day.  It’s like living in an alternate universe.  Every day I feel excited to know what the day will bring.  Every day when I sit down with her I am prepared to feel that mixture of excitement, surprise and overwhelming gratitude.  Every day I think, will I ever stop being surprised?  How long will it take?  I don’t know.  But here’s what I do know – everyday I am overcome with emotion, respect and profound joy in  all that is my daughter.  I am sincerely grateful to read what she tells us, and grateful to all the people who have made it possible for her to do so.  Grateful doesn’t cover the emotions, but it’s the best I can do at the moment.

Yesterday in her *RPM session (follow this link to read more about RPM, which is not the same as FC or facilitated communication, though there is some overlap in that they both presume competence and treat the person with the respect most of us take for granted) she was asked, “What else has an engine?”

Emma spelled out, “Lets say leaf blower.”

My smile was like the Cheshire Cat’s, from ear to ear.  Leaf blower?  I LOVE that!  And later she asked for a clarifying question and then wrote a wonderful answer to a question about what changed once we began using automatic train engines.

“Until I could prove that they were intelligent nobody would come and assess them.  Guilty until proved innocent.  The children were profoundly and hopelessly retarded until they could prove they were intelligent.”  ~ Rosemary Crossley from  Annie’s Coming Out

“It was simply too threatening; my discovery questioned the basic assumptions on which care was offered…”  ~ Rosemary Crossley from Annie’s Coming Out

My daughter is one of hundreds of Autistic people who are writing and typing to communicate and in doing so she is proving every day how extremely gifted she is.  We are at the very beginning with all of this.   There are others who are far ahead of us, those who have published their thoughts, with more being published all the time.  Incredibly, what Rosie experienced, those deeply held prejudices back in the 1970s, continue to flourish today, now more than thirty years later.

“This was one of our standard problems:  people who doubted the children were always so sure of themselves that they openly expressed their skepticism in front of them.  It did not occur to them that if they were wrong they were terribly rude, and that they were making it very difficult for the children to respond to them.  How do you talk to someone who tells  you that they are convinced that you cannot talk?  What are they going to ‘hear’ when you try to talk?” ~ Rosemary Crossley from Annie’s Coming Out

We are living in a time when more and more parents, educators, people who work with Autistic people and Autistic people are facing the skeptics.  We are offering continued proof of our children’s and Autistic people’s intellectual gifts, indisputable evidence of all they are capable of.   My daughter is but one of a great many.  As long as she gives me her permission, I will continue to report some of what she is saying here while hoping that one day soon she, and others like her, will no longer be placed in  the insulting position of having to prove their vast intelligence, and themselves, to anyone.

Rosemary Crossley and Anne McDonald

Unknown

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One of My Favorite Blogs…

Posted on October 12, 2013 by | 13 comments

There’s a blog I love called, Musings of an Aspie written by Cynthia Kim.   Cynthia Kim also has a book, I Think I Might Be Autistic , which is now available as an e-book and in paperback.  She writes about her decision to pursue a diagnosis, with lots of tips for those who might be thinking of doing the same.  “I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults” begins from that “aha!’ moment, addressing the many questions that follow. What do the symptoms of ASD look like in adults? Is getting a diagnosis worth it? What does an assessment consist of and how can you prepare for it?”  But the book is much more than just advice about whether to get a formal diagnosis or not.  It’s about identity, who we are, what that means and why we care.

On Cynthia’s blog she writes about marriage, motherhood, being a “self-employed aspie” as well as a whole host of other topics.

Here are a few of my favorite quotes and posts from her blog:

From Beyond The Talk:  What Else Autistic Girls Need to Know About Puberty

When it came to puberty, my parents did what many parents in the seventies did: they gave me a book about puberty written especially for girls. It was a slim cranberry hardback with an ambiguous title like “Everything is Changing.”

I was a voracious reader, so I would curl up in my beanbag and scour the pages for clues to the mysterious changes that were on the horizon. I think I had many of the same fears, anxieties and curiosities about puberty as my friends had. Certainly my body went through the same changes that other girls experienced. However, I think there are some areas where girls on the spectrum would benefit from additional information or guidance. That’s what I’m going to focus on in this post.

Cynthia wrote a kind of parody about “NT’s” in the same writing style so commonly used when non autistic people write about Autistics.  It is perhaps, one of my favorite posts, although it’s hard to say as there are a number vying for that position.  The quote below is from her post, What is Neurotypical?

“Perhaps the most obvious giveaway is an NT’s tendency to make “small talk” or to want to “chat” with you. While small talk appears to be nonfunctional, for NTs it serves a very specific purpose. It’s a good idea to humor them and participate to whatever degree you can tolerate. If you’re patient with them, many NTs will soon feel comfortable enough to move from small talk to more interesting, in-depth conversations.

Another common sign that someone is an NT? Touching. NTs enjoy all sorts of physical contact and often use touch to greet friends, family and even casual acquaintances. While it’s hard to fathom why your real estate agent or hairdresser feels the need to send you off with a hug, try not to be judgmental while fending them off. NTs are simply wired differently.”

From Cynthia’s Aspergers and Marriage Series, Lessons From an Aspergers – NT Marriage :

The Scientist: “You don’t have to make my lunch every morning. I can pick something up in the cafeteria.”

Me: “I don’t mind. It only takes a few minutes and I know you’d rather have something healthy to eat. This way you don’t have to waste time waiting in line.”

The Scientist: “So you mean you make my lunch because you care about me, right?”

Exactly.

I will end with a quote from her post, A Cognitive Defense of Stimming (or Why “Quiet Hands” Makes Math Harder):

The obvious reason for objecting to “quiet hands”-type instruction is that it shames the child for moving in a way that is natural and comforting for them. Others have written eloquently and in great depth about this subject; I’ve linked to some key pieces below rather than repeating what has already been said.

The case I want to make against “quiet hands” is that in addition to being emotionally damaging, it’s cognitively counterproductive. Think back to the experiment where the people who were told to resist eating chocolate gave up more easily on solving puzzles. Substitute stimming for chocolate and learning long division for solving puzzles. Add in the fact that autistic people have impaired executive function to begin with, making inhibition of actions more challenging, and you can see why asking a child to resist stimming is counterproductive if you’d also like them to learn a new skill.

For those of you unfamiliar with Cynthia’s work, I urge you to go now and enjoy, and for those who already know about her writing, how did my medley of some of my favorite posts from her blog measure up against yours?

Cynthia's Book

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The Teen Behind the Blog

Posted on July 22, 2013 by | 9 comments

There’s a blog called, TeenTyper, written by someone who describes himself as, “an autistic teenage awesome boy.”  He started his blog two years ago when he was 14 years old.  On a recent post he wrote, “the feeling is bold saturated thimbles of strength.”  Em and I had the honor to meet the young man behind the blog while in Syracuse.  As he also lives in the same city as we do, we got together with him and his mom yesterday.   He is non-speaking, but types and so he and Em typed to each other for a little while and then I asked if it would be okay to talk to him about his blog.  He said it would.  I asked him, “Why did you start writing your blog?”

He typed, “i startd because my aggravation abt my spaz speaking.”

This is from his Subway Poem –

“Subway subculture asserting the stroll
I watch and try to look like another old soul…”

Later I asked him, “Is the blog a place where you want to tell people something specific or is it more a general way to communicate your thoughts, or something else?”

He typed, “neurotypical need to be more conscious abt mean stares and hearing my voice will help them understand who I am.”

From Let me say:

“Before you judge let me say
You need to try being me
Before you judge let me say
I feel awful when you overly stare at me
Before you judge let me say…”

We need to be aware of the harm we do to each other with our judgments and implied criticism.  We need to pause and take our time.  We need to give each other the benefit of our kindness, we need to slow down…  we need to talk less and feel more, we need to give one another the gift of acceptance, we need to stop with our projected fears, our desire for sameness, our impatience, our disregard for another’s humanity…  we need to embrace one another.

From Wasted Words:

“Words wasted on nonsense
Still
Define…”

I urge everyone to go over to TeenTyper and give it, and the “badass awesome” teen who writes it, some love and support!

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We Are Like Your Child: The Blog

Posted on July 10, 2013 by | 27 comments

*To Emma’s Hope Book followers – This post was password protected so that those I quoted could read it first and give their approval before I published.  They have and now it is here for everyone to read!

We Are Like Your Child is a new blog created by a group of people, all of whom have been instrumental in helping me understand autism and what it means to be Autistic.  These are the people I think of as my mentors.  They have helped me more than I can describe.  They are a diverse group in every way, but one.   They all have lived their lives with the same neurology as my daughter.  They are Autistic.  These are the people I often reference when I talk about how our lives changed.  It is their voices, their lives, their stories that have changed mine.  To say I’m excited to introduce their collective blog to all of you, doesn’t really sum up what I’m feeling!  I am grateful.  I am incredibly grateful.

This is exactly the sort of blog I would have devoured, had it existed in 2004 the year Emma was diagnosed.  The year when everything was so terrifying.  The year I began, unsuccessfully, to look for adults who might give me insights into my child’s mind.  We Are Like Your Child is created by those adults.  I will be following eagerly and closely.  Posts so far have included such topics as time agnosia, how one person dealt with having meltdowns as a child, routines and what happens when they are disrupted, and life skills.

A number of the blog’s creators agreed to answer a few of my questions.  (Thank you everyone!)  What follows is a group interview representing the many voices and points of view of its creators.

What is “We Are Like Your Child”?

“We Are Like Your Child is a collective, community blog by disabled, mostly neurodivergent folks.  The name comes from the whole declaration of “You aren’t like my child!  You can X, Y, and Z!” that we hear all too often.  The thing is, my way of doing Z, Y, and X is vastly different from how most people do, because I have a profound inability to do Q, G, and -7 but am absolutely rockin at P, F, and pi or whatever.  So this is kind of a place to write about our self accommodating mechanisms, the workarounds we use to function in a world not even a little built for us.  It’s a collection of coping strategies.  It’s our difficulties.  It’s our strengths.  It’s a collection of awesome people talking about our unique problem solving. ”

“We are more like your children than you know… and while we are all different, we are a roadmap of sorts, a set of guideposts pointing to the many potential directions your child may end up journeying to in the course of their life.”

“There are difficulties and sometimes they are very difficult. I actually do talk about them on tinygracenotes fairly often but since it is in the context of relating to what someone else is asking, perhaps that does not stand out the way it needs to. In this blog, we want to have our stories show that things are sometimes difficult and sometimes very difficult, and yet we live lives.” ~ From the post Lost, Mistimed and Melty.

Why did all of you create this blog?

“The most common stories in the media about disability tend to be inspiration porn or people who have a disability but have never had any problems ever (a subset of inspiration porn) or are the tragedy, doom, gloom narrative.  We are presenting a bit more reality than that.  Reality is sticky and messy and complicated and beautiful and difficult and sparkly all at once.”

“We love your child.  What?  You say we do not know your child?  No, maybe not.  But your child is a member of our tribe, our neuro-tribe, our extended family of those who share similar types of brains and similar ways of being in this world and so we do love your child and we want to try to help the Hard Knocks in their School of Life fall a little softer than they did on us.”

” The number one most important thing to guide you in your journey of parenting an Autistic child is your child.  Listen to your child – really listen.  The number two most important piece of your map in the huge love you have for your child.  Feel that love, feed that love, let that love guide you toward doing the best for your child.  We want to be the third big resource for you.  We are the grown-ups who used to be your child.  We want to help your child.  We want to help you.  We created this place as a bridge between our world and yours where we can meet and conspire.  Our collective job is to make the world a better place for Autistics and , specifically, for the Autistics you know and love.  Let’s work together to make that a reality for all of us.”

Yay!  Who among us doesn’t want to work together to make this world a better place?  I do!  I do!  *Jumps up and down.

Ahem.  My next question:  Who do you want to reach?

“I’m hoping to reach other disabled folks, really.  But I am also hoping to provide a resource for people who know and love disabled kids.  If we’ve tried 8,000 things, none of which are “well don’t be autistic then” and had some success, then maybe that’ll mean some kid doesn’t have to reinvent the wheel.”

“We want to reach other adults who are looking for ways to be in this world that suit their needs better.  We have advice from our own experience.

“We want to reach those who love autistic adults and want to help make their lives better.  We can tell you what kind of help we appreciate and explain why help that is not very helpful is… not very helpful.

“We want to reach parents of Autistic children.  Your child’s diagnosis was not the end of the world!  It was the beginning of a new and beautiful life as a member of our tribe.  Your child is not a tragedy!  Your child is beautiful and we want to rejoice with you in the diagnosis that will help your child get their needs met in ways you never dreamed possible.

“We want to reach anyone who wants to know that the lived experience of autism can be difficult, yes, but can be indescribably beautiful as well. We want to reach anyone who is open to learning about Autistic people and how to accept us, how to live co-operatively with us, or even how to be a happier Autistic yourself.”

The guidelines for submissions can be found ‘here‘, but in addition to what a couple of the creators had to say, I just had to quote from their blog:  “So you think you want to submit to We Are Like Your Child? Great! We want to hear from a large number of people, about how you manage to exist in a world that isn’t made for you, and yet like yourself anyway.”

Who can submit?

“We do not take submissions from not disabled people.  Well, I mean, they can send them, the system won’t explode, but we only print submissions from disabled people.”

“We also don’t print submissions that amount to “I just decided to act normal yay me” or “woe unto me life is terrible bc disability.”  Those markets are pretty saturated.”

Do you encourage people to ask questions?

“Yes!  Please ask questions!  We have a facebook page and we also are all reading comments on the blog itself.”

A wonderful new blog has been born.  Let’s welcome it into the world!

The Blog:  We Are Like Your Child

The Facebook Page:  We Are Like Your Child

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Protected: “We Are Like Your Child”

Posted on July 9, 2013 by | Enter your password to view comments.

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