Category Archives: Blogs By Autistics

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

I am More Than My Body

Posted on March 10, 2015 by | 14 comments

Wavering, derelict shouts hold different ideas about want.

Careening words push and shove their way out of my mouth,

the chatter cannot be reined in no matter how hard I try.

My mind is a starving questioner

with a body that pushes mute buttons in people’s minds.

Moments looking for connections to the two separate entities

knowing the possibilities are within reach,

if only I could beat those troublesome, noisy words back

to give the more contemplative thoughts equal opportunity.

Contemplative

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A Documentary, Two Blogs and A YouTube Video

Posted on May 15, 2014 by | 5 comments

The following is a trailer for Spectrum:  A Documentary about Autism and Sensory Perception.  This is the documentary I cannot wait to see when it’s finished!  It features Nick Walker, Martial Artist, writer of the single best description I’ve ever read answering the question  “What is Autism?” and all around amazing guy and Judy Endow, a terrific writer, speaker, talented painter and sculptor and friend.  The third person featured is Tito Mukhopadhyay, eloquent poet, writer and son to the woman I am filled with gratitude for on a daily basis, Soma Mukhopadhyay, who taught me how to communicate with my daughter.

 

This is the first of two blogs you must know about, if you don’t already.  How to Talk to a Woman Whose Child is Dead the most recent post on Unstrange Mind.  It is so beautifully written by the multi-talented Sparrow Rose Jones, who also sells her fabulous art work in the form of t-shirts, stickers, hoodies.  Click this link Red Bubble to see and purchase Sparrow’s wonderful art work.

The second blog, We Are Like Your Child, is one I’ve been following since it was created.  It’s a group blog with a variety of people, mostly Autistic, who write about a wide range of topics.  A Checklist For Identifying Sources of Aggression is a great bullet point checklist everyone should read and Meltdown, Night Blooming Flowers: Sudden Skill Acquisition and Extreme Context Dependence,  Teaching Us to be Silent, and Please Don’t Rush Me are other examples of the kinds of posts you’ll find.

And finally I’m going to end by sharing again a video of the presentation Emma and I gave at CoNGO affiliated with the UN a month ago on World Autism Awareness Day, now captioned thanks to the beautiful and talented, Savannah Nicole Logsdon-Breakstone.  Thank you again Savannah!

 

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Your Child’s Been Diagnosed. Now What?

Posted on May 12, 2014 by | 16 comments

I always think I’ve written something already about any given topic only to realize there is more to add.  So it was the other day when asked about advice for a parent whose child was just diagnosed with autism.  This is a question that comes up often and always when asked I hesitate and here’s why.  For every child that might respond to various “interventions” the way my daughter did, there will be countless others who will not.  The therapy may be worse or better.  The child may have different sensory issues, they may be voracious readers, hyperlexic or they may not be able to see the printed word because of visual issues, the letters may swim on the page until a different background is found or some other tweak is done, which allows everything to stay still.

There may be auditory issues that my daughter does not share, tactile, physical issues and the list goes on.  So what to do?  How does a parent wade through all the opinions?  How do you find a way to quell your fear, respect your child, ignore that list of all that’s wrong and find the things that will help your child flourish?

For me it boils down to two essentials.  The first is to presume my child competent.  I’ve written about this concept a great deal, but here are a few posts which talk about what that means – ‘here‘, ‘here‘, ‘here‘ and ‘here‘.  Presuming competence is very much a work in progress.  What I once presumed as “competent” my daughter has shown me didn’t go nearly far enough.  We do the best we can with the information we have.  But anything intended to “help” my daughter, anyone who is going to be spending time with her, must understand the concept and be committed to putting it into action.  This includes, speaking to her and not about her in her presence.  It means, even if the child shows no sign of understanding, even if the child has no spoken language and has never written a single word, we assume they can understand more than their bodies and gestures and utterances indicate.

Presuming competence has evolved for me and is helped by keeping my fear, judgment and assumptions checked at the door.  I cannot presume my daughter capable if I am simultaneously engaged in a running list of all she’s doing wrong.  I cannot practice a presumption of competence if every interaction I have with her is really an ongoing test where I’m insisting she prove herself to me.  Presuming competence is a life long practice and it is has far-reaching implications for not just my daughter, but all human beings I come into contact with.

Presuming competence is key, without doing this, everything else I do, no matter how great my intentions, will fall flat.  I have to believe in my kid.  It means that I speak to my child the same way I would speak to any child their age.  It means I approach my child believing in their ability to learn.  It means I believe they can and will learn.  It means they will communicate, I just have to find the best way to support them so that they can and it may not be with spoken language.  It means any therapy, no matter how popular, must be based in presuming my child competent, respecting my child’s process and treating them with the same respect I would insist on for anyone coming into contact with my non autistic child.  It means I have to do the inner work regarding what I believe, notions of should and shouldn’t, entitlement, prejudices, and whatever ideas I may have about my child and who they should be.  It means I approach my child with love, consideration, respect and curiosity.

I have come to believe that services, those services that everyone talks about and that are centered on our children, should include services for parents.  Early intervention for parents is crucial and much needed.  We parents are often in greater need of help and support than our children.  Good quality respite care, therapy for us, the parents, designed to help us cope and sort through our messy emotions so that we are in a better position to be there for our children.  I needed support from parents who’ve traveled the path I now found myself on.  No parent should ever feel the kind of fear I once felt.  Which means we have to change the current conversation surrounding autism if we are going to help our children.  No one is helped by having their every flaw (which is completely subjective, by the way,) scrutinized, both publicly and privately.  There are ways to get support and the help we and our kids need without demonizing our children and talking about them in ways we would never allow people to speak about our non autistic children.

Which brings me to the second essential thing – Autistic people.  It is imperative that all parents be given a list of blogs written by Autistic people who are describing their experience of the world.  This has to be essential reading while we figure out a way to put into place advisory programs made up of Autistic adults who are able to help parents understand their children.  These must be paid positions just as all other people involved with early intervention are paid.

We need mentorship programs of Autistic people mentoring our kids AND mentorship programs where our Autistic kids are mentoring younger Autistic and non Autistic kids.  One of the most valuable relationships my daughter currently has is with a little boy who shows no signs of being Autistic himself.  But they enjoy being together and the boy’s parents encourage their relationship. An inclusive society is key as we move forward.

On the Resources page of this blog I’ve put together a fairly extensive list, beginning with non-speaking Autistic people’s blogs.  I am always adding to this list.  I encourage all parents to start clicking on those blogs, find the ones that resonate and speak to you and follow them.  Start commenting on them, reach out to others who share your child’s neurology, develop relationships.  Listen and learn.  You will learn more from doing this than anything I learned in the half-dozen years I spent listening and reading non autistic people’s opinions.

And finally this is a short list of what I consider essential reading/viewing for anyone who has an Autistic child.

Wretches and Jabberers
Ido in Autismland
Intense World Theory of Autism

Emma and Teddy

Emma and Teddy

Emma, Barb Rentenbach and Lois Prislovsky

Emma, Barb Rentenbach and Lois Prislovsky

Emma, Mark Utter and Ibby at the ICI Conference - July, 2013

Emma, Mark Utter and Ibby at the ICI Conference – July, 2013

Emma and Laura

Emma and Laura

Emma and Ibby

Emma and Ibby

Larry Bissonette takes Emma's photograph

Larry Bissonette takes Emma’s photograph

Emma and Henry

Emma and Henry

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Michael Scott Monje Jr.

Posted on January 10, 2014 by | 8 comments

I want to introduce all of you to Michael Scott Monje Jr.  “Michael Scott Monje, Jr. is a graduate of Western Michigan University with an MFA in Creative Writing and a BA in English and Philosophy. He’s also autistic, a fact which everyone overlooked until he was in his late 20s.”

Michael has a blog, Shaping Clay where he writes about a great many things including – Autism, Human Rights, Gender, and where his serial novel, Defiant can be read.

Mike’s novel The Mirror Project, a Sci-Fi psychological drama about artificial intelligence forces us to consider what happens when we create a being that cannot be “controlled” or forced to do as we bid.  There are moral and ethical implications, but more to the point, The Mirror Project is about oppression, our responsibility to not only each other, but to ourselves, and how we must relinquish the desire to control, in favor of encouraging and supporting one another’s independence, which in turn benefits the entire human race.

The artificial intelligence created is called Lynn, the name of the creator’s dead wife.

“Lynn’s existence is continuously dictated from without while she struggles to articulate the damage that her creators are doing to her.”

It was impossible for me to read this novel and not highlight the similarities between what Lynn ponders and what, I can only imagine, many who cannot easily access language or who have difficulty synching their mind with their body, must wonder.  Lynn asks early on “…what is the soul if it is not the constant awareness of the desolation of your own existence?”

Later Lynn protests the way she has been treated, “That attitude will open the door to all kinds of rationalized brutality on your part.  You might even break me and change my behavior permanently, but you will never be able to know that you did the right thing.  You’ll have to live with the idea that literally every experience I have for the rest of my life might be re-traumatizing me.  There’s no rationalizing that. You either refuse to create the situation in the first place, or you admit what you’re doing and accept the cost.  Could you accept the cost and live with yourself?”

Nothing’s Right is about a year in the life of an Autistic boy who must navigate the messy and painful maze of growing up in a family whose neurology differs from his own, a school that does not even attempt to understand him and a world where he is seen as the sum total of problematic behaviors.  Nothing’s Right has some of the most brilliant and haunting passages depicting “self-injurious behaviors” that I’ve ever read.

If you are not familiar with Michael Scott Monje Jr.’s writing, it is time you were.

You’re welcome.   🙂

The Mirror Project By Michael Scott Monje Jr.

The Mirror Project By Michael Scott Monje Jr.

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To Educators, Therapists & Doctors

Posted on October 25, 2013 by | 61 comments

You are the first people most parents meet after getting our child’s diagnosis.  Therefore you have tremendous influence on how we view autism, what that means or doesn’t mean, what services we seek, and how we then view and treat our child.

That’s a huge responsibility.

The onus is not entirely on you, of course, but don’t kid yourself, you have the power to change the course of a child’s life and their family’s with your knowledge and what you tell their parents.  If you don’t know the answer to a question, do not pretend you do.  Do not rely solely on whatever university you went to, or the medical journals you may subscribe to, the most recent statistic, medical study or your colleagues for information.

If you’ve been taught a particular therapy or  teaching method is the only scientifically proven method to “treat” or teach Autistic children, find Autistic people who were given that therapy or method as children and learn what they have to say about it.  If you find a number of Autistic people are speaking out about a specific treatment or method, saying they have post traumatic stress as a direct result, reconsider your position.  If you still feel this therapy is important to pursue, ask yourself why and at the very least, inform the parents who are considering this method that there are Autistic people who believe it was damaging to them.  It doesn’t matter whether non autistic people and professionals agree, you have an ethical obligation to tell parents that this treatment or method has caused damage to a great many.

If you think you know, if you are convinced you are right about some aspect related to autism, do more research and make sure what you think you know, is in fact true, if it isn’t or if it isn’t clear, then do not present it as though it is the “truth”.  I don’t care how well known or famous you are in the field of autism, if you are not engaged in reading and talking to Autistic people outside of a clinical setting, you have more to learn.  And do not be afraid to admit when you don’t know something or if you find you are wrong about something you previously thought to be true.  Most of us would prefer being told by a professional that you don’t know something or thought you knew something, but now realize you were wrong than to be given incorrect information.  There’s massive amounts of incorrect information out there.  Please.  Don’t add to it.

You have a responsibility, not just to Autistic people, but to those of us who are their parents and to your profession to read everything you can about autism and what it means to be autistic.  If you’ve never read anything written by an autistic person, now’s the time to do so.  If you cannot bear the idea of doing so, if you believe your various degrees are enough, if you feel annoyed, believe I’m being presumptuous by suggesting you do more, then find another profession.  You aren’t doing anyone any favors by continuing to pursue a career in a field that has so few concrete answers but that you are convinced you know all there is to know.

Even if you’ve read one or two books, maybe seen the latest documentary featuring one or two autistic people, it’s not enough.  You need to read blogs and books written by non-speaking Autistic people, there are more and more of them being published every year.  You need to read the writing of people who speak, can sometimes access language, access language all the time, but do not say what they intend, people who have intense sensory sensitivities, those who are hypo sensitive as well as those who are hyper sensitive and those who have a mixture of the two.

Examine your beliefs:  Do you believe that non speaking Autistic people cannot speak because they aren’t trying hard enough or because they do not have anything to say?  If someone’s facial expressions are hard to read, do you believe that means they do not feel emotion?  Do you think Autistic children lack empathy?  Are you convinced that Autistic people are unreachable?  Do you believe Autistic people have no desire for friendship, lack the ability to love, cannot understand what is being said and written about them?  Do you think that if an Autistic person acts more like a non autistic person they have “recovered”?  Do you believe this is a worthy goal?

Please.  Do all of us a tremendous favor.  If you are entering the field of autism or are an educator, therapist, doctor or professional in the field, in whatever capacity that may be, question everything, read, ask questions, examine your beliefs.  Learn what so many have gone through at the hands of well-meaning professionals.  Remain curious, stay open to new ideas and continue to adjust what you believe.

I was terrified when we received my daughter’s diagnosis.  I knew very little about autism and I looked to all of you for answers.  The answers I was given I’ve since learned were mostly incorrect.  Because of those answers, we made a great many mistakes.  Mistakes that hurt our daughter.  Other parents do not have to go through what we went through.  There is so much great information out there, but often finding it can feel overwhelming and impossible for parents.  You have a great deal of power to affect how families think about and respond to their child and their child’s diagnosis.  You can help so many families help their children in ways that are respectful, by honoring them and their neurology and not making them feel they are broken or are to blame for how society misunderstands and treats them.

To those non autistics who this letter does not apply, you who have dedicated your lives to helping children like mine, I thank you.

Rosemary Crossley, Soma Mukhopadhyay, Christine Ashby, Anne Donnallan, Douglas Biklen, Mary Schuh, Leah Kelley, Pascal Cheng, Harvey Lavoy, H. Markram, K. Markram, *Marge Blanc, Susan Marks,  Paula Kluth, Char Brandl, Cecilia Breinbauer, Phil Smith, Barry Prizant *do not have photos* and so many others, thank you.

Rosie Crossley

Soma Mukhopadhyay

Christy AshbyAnne DonnallanDouglas Biklen

Mary ShuhLeah

PascalHarvey LavoyH. MarkramK.Markram

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Posted in Autism, Blogs By Autistics, Parenting

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Sparrow Rose Jones’ E-Book

Posted on October 22, 2013 by | 14 comments

Sparrow Rose Jones wrote an e-book No You Don’t: Essays From an Unstrange Mind that is now available on Amazon.  The title comes from a powerful essay she wrote on her blog – Unstrange Mind –  in response to the many parents who have told her how they would like nothing more than to have their autistic child grow up to be like her.  Sparrow writes:

“I used to say, “I hope she’s much better off than I am,” or simply, “no, you don’t,” but over time I learned that parents refuse to accept that answer.  Maybe they think I’m doing that social thing where someone compliments you and you are expected to refuse the compliment a time or two, finally accepting it but maintaining your veneer of humility.  Or maybe they’re just baffled.  But sometimes they even got angry so I finally learned that I should answer, “thank you.  That’s very kind of you to say.”  Reinforced behavior — reinforced by social censure if I dare give the wrong response.”

Sparrow writes,

“… what I wish to come from this book:  a recognition of the shared humanity we all enjoy and a sense of connection among people coming together across a wide gap of experiential realities.”

And again from the essay – No, You Don’t:

“… they think, “my child is non-verbal.  My child goes to school and crawls around on the floor, meowing like a cat.  My child still wears diapers while all her same age peers have been toilet trained.  My child bites and hits people.  My child bites and hits herself.” And so on.

“Then they hear that I was many of those things, myself.  I was kicked out of the classroom for crawling on the floor and hiding under the tables.  My first grade teacher said I was “mentally retarded” and petitioned (successfully) to have me removed from her classroom.”

Further along she writes:

“I was raped.  I was abused — domestically and otherwise.  I was molested.  I was taken sexual advantage of.  I want you to teach your children to say no and I want them to know how to mean it and back it up when they say it.  I want you to teach your children to value themselves and I want you to teach them to own their bodies.”

Sparrow writes about how she lives in “crushing poverty”, how she has spent a great deal of time homeless, couldn’t keep a job,and was “unable to consistently keep a roof over my head or food to eat.”

In her follow-up to her No, You Don’t essay she writes about the response she received because of it.  “There was a small group of people, though, who read my essay and became angry.”  She describes how she was attacked by parents of autistic children, “I felt like I was being punished for writing and all that compliance training kicked in as a result.  I closed down my blog.  I became physically ill from the stress and shame and ended up in the emergency room more than once as a result.”

The next essay is called “Bullies, Bullying, and the Struggle to Speak My Heart”.  The first sentence of that essay is:

“Bullies have been one of the most constant things in my life.”

Sparrow writes:

“An Autistic kid who is behaving in a violent manner is an Autistic kid who is seriously suffering on a daily basis and needs a lot of help.  And being able to speak doesn’t always mean that a kid will be able to tell you what is wrong.”

There are too many wonderful essays in this e-book to quote in one short post.  Sparrow writes honestly with tremendous compassion for all of us.  She ends her beautiful collection of essays with this:

“May my journey of self-discovery inspire you to journeys of your own.  Where there is life, there is hope.  Autistic lives do not always look the way you might expect or hope they would look, but you must keep a sharp eye out for the tender flowers as you travel and you must understand that Autistics often bloom in surprising and exquisite ways.  Don’t try to shape us to your garden or we may wilt.  Enjoy and foster our own, unique beauty in all its fierce wildness and you will find your heart and your truest reward there.”

No You Don't

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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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Some Thoughts on Accommodation

Posted on April 17, 2013 by | 15 comments

A year ago I did a crash landing into the world of bloggers, all of whom were Autistic.  I had been looking for them for years, but suddenly, or so it seemed to me, I found not one, not two, but dozens and dozens of blogs written by Autistic men and women in their 20’s, 30’s, 40’s and 50’s.  It was surreal because these people were writing about their lives, giving glimpses into what it is like to grow up and live in a world and society that does not “see” you, yet talks about you and perpetuates misinformation about you with little interest in verifying whether their interpretation is in fact correct.

Pretty quickly after my crash landing I found this ‘post‘ from the blog Radical Neurodivergence Speaking about attending an Autism conference where the keynote speaker said, “When one family member has autism, the whole family has autism”.  The blogger writes, “My autism is not about my parents or my siblings or my non autistic friends and extended family. It is my neurology. It is not theirs. No matter how much they listen to me, how much they try to understand, it is not about them. It’s a lot easier to protect the martyr mentality when you insist it’s about you, but that’s just not how it is. As long as it’s considered to be our parents’ thing, though, the system will continue to be broken. We keep having to fight for ownership of our own experiences, and that’s not right. It isn’t even wrong. It’s so backwards there is not yet an adjective for it.”

Now remember, I was at the very beginning of finding actual people who were talking about their own neurology as opposed to ‘experts’ talking about their interpretation or ideas about a neurology they did not have.  I had to reread that paragraph before I could go on.  “As long as it’s considered to be our parents’ thing, though, the system will continue to be broken. We keep having to fight for ownership of our own experiences, and that’s not right. It isn’t even wrong. It’s so backwards there is not yet an adjective for it.”

I had to get up and walk around because this concept, this simple, and now it was dawning on me, pretty obvious idea was not something I’d really considered before.  I had to sit down and think about this.  “As long as it’s considered to be our parents’ thing, though, the system will continue to be broken.”  And then I realized something.  I didn’t like what I realized, but I couldn’t tamp it down.  It kept springing back up into the forefront of my mind.  I realized by making autism and my daughter’s neurology about me, I would continue to feel sad and victimized by “it”.  “It” was this terrible thing that had happened to us. “It” being the operative word.  “It” wasn’t my daughter.  “It” was what we fought against.  And by then adding a judgment to my daughter’s neurology (it’s bad) I was limiting it even more and adding a layer of horror to it.  Without meaning to I was making things much, much worse for all of us.  Without knowing it, I was doing the opposite of accommodating “it” I was co-opting it and making it all about ME.

Now before people start saying things like – wait a second, autism DOES affect the whole family, or, but the siblings DO feel x,y and z – I need to state the obvious – of course an autism diagnosis affects the whole family, but affecting the family is different from saying, “When one family member has autism, the whole family has autism.”  That simply is not true.  The whole family does not “have” autism.  This is not FACT.  Insisting that it is fact when it is not, does not serve any of us, but mostly it is a massive disservice to my daughter and all who are Autistic.

When my father had his horseback riding accident I was nine years old.  It completely affected my outlook on life.  At the age of nine I considered death, hospitals, doctors, what it means to be physically disabled, in a way that my same age peers were probably not contemplating.  Yet I was not suddenly “disabled” because of his accident.  None would have suggested that.  I might have been helped had I seen a therapist to work through some of my fears and later phobias that resulted from his accident, but that is very different from co-opting his experience.  When my father was in a wheel chair, the entire family did not suddenly lose the use of their legs.  My father needed accommodation, ramps needed to be built inside our house where there were stairs, he needed assistance getting into and out of the swimming pool, but the rest of us continued to walk around, ride our bikes, play with our friends and live our lives.  Did my father’s accident affect me, well of course it did, but never would anyone have suggested that because of my father’s disability the entire family was therefore disabled.

“We keep having to fight for ownership of our own experiences, and that’s not right.”

Ownership.

We all need and want to be heard.  Parents want their experiences to be heard and acknowledged.  Siblings want their experiences heard and acknowledged.  But that should not be at the cost of our Autistic children.  ALL people deserve to have the accommodations they need.  Just as my father required ramps built in our house, my daughter needs support to communicate without the added pressure or guilt that she is causing the rest of us hardship.  We need to reframe the conversation.

More terrific posts from Radical Neurodivergence Speaking:

I shouldn’t have to beg

I’m on your kid’s side too

Autism and child abuse: Both for April. Oh IRONY.

More Toxic Lessons Learned

Em

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The Influence of Others

Posted on April 10, 2013 by | 13 comments

On March 1st, 2012 my life changed.  I had no idea it was about to change.  I had no idea a single blog post would impact my life the way it did.  I didn’t know when I clicked on the link a commenter sent me on this blog, taking me to someone else’s blog, that I was in for the ride of a lifetime.

I had no idea.

On March 1st, 2012 I read Julia Bascom‘s post ~ The Obsessive Joy of Autism.  A post she’d written almost a year before, but I was only now reading.  Her post begins with this, “I am autistic. I can talk; I talked to myself for a long time before I would talk to anyone else. My sensory system is a painful mess, my grasp on language isn’t always the best, and it takes me quite some time to process social situations. I cannot yet live on my own or manage college or relationships successfully.”

I had no idea.

I have read that post half a dozen times since I discovered it.  And then I read her post just preceding entitled Grabbers.  “The grabbers don’t believe that we can be happy or find meaning unless we are exactly like them…”

Read that again – “The grabbers don’t believe that we can be happy or find meaning unless we are exactly like them…”

As a parent I want nothing more than for both my children to find their way toward meaningful lives, lived with purpose.  That they will then also find happiness I thought was a given.  Or so I always believed.  Does that mean they must be like me?  Do I believe that their ability to feel happiness is reduced, lessened, not relevant, inadequate, inferior, if it looks different from my idea of what constitutes meaning and happiness?  Can I let go of my preconceived ideas pertaining to happiness and what that means for anyone but myself?  Do I even know what happiness is for me, let alone another?

I had no idea.

These were the questions that began to gnaw at me as I read Julia’s blog, Just Stimming.  I urge anyone who is not familiar with her blog to read it.  Just Stimming is beautifully written as well as powerful, poignant, evocative and for me anyway, gut wrenching.

Again, from her post Grabbers –  (**Words highlighted in bold are mine, as in Julia’s post those words are italicized.)

“The hands are everywhere.

They’re at our chins. “Look at me,” with a face pressed in so close to yours that you count the pores until they force your gazes to meet.”

“…protesting just means you need to be grabbed more often, with harder and more insistent hands, until you realize that the way you move is fundamentally wrong, as wrong and deficient and disturbing and dangerous as you are, and if you want to be counted as a “you” at all you must let them grab you until you can stop your self.”

I had no idea and now I realize that claim begins to ring false, even to my ears.  How was it possible to not have considered this?  But no.

I had no idea.

“…Until you realize that the way you move is fundamentally wrong…”

The post ends with, “In the end it just comes down to you are wrong, and for that you must be punished. It simplifies to your body is not your own, but it is mine.”

I am about four years old, we are living in the first house I ever lived in.  Our baby sitter, Mrs. Williams stands guard outside the bathroom where I have been told I will stay until I have had a “bowel movement.”  I am sure she will not let me leave, but I cannot go to the bathroom on command.  I feel anxiety course through my body, it is as though my entire being is encased in a net, I can breathe, but I am trapped.  I sit staring straight ahead, wondering how long before she begins to yell at me.  I am terrified of Mrs. Williams.  She smells of antiseptic soap and wears a nurses uniform that crackles when she moves and those awful white shoes you see in hospitals that sound like she’s stepped in chewing gum when she walks.  Her skin is pasty white and hangs from her body as though it were half a size too big.   But mostly it is her eyes, partially hidden by glasses lens that  do not conceal her anger and resentment.  Those eyes hurt to look at because I see so much that isn’t said.

Finally I stand, tip toe to the sink, grab my drinking cup and fill it with toilet water then pour the water back into the toilet and flush.  I place the cup carefully back on the edge of the sink and wait for Mrs. Williams to open the door, allowing me to escape.

“Your body is not your own, but it is mine...”

Julia’s blog was the beginning.  It showed me a different path and urged me to follow it.  I did.  Along the way I have found countless other blogs and have even been fortunate enough to meet many of the authors of those blogs.  Because of Julia’s blog I met my mentor and friend Ibby.  Because of Julia’s blog I read E.’s blog The Third Glance, which I intend to write about in the near future.  Because of Julia I have become a  (I hope) better parent.  Because of Julia I see the world differently.  Julia’s writing opened my eyes.  I wonder if any of us can ever really know how deeply our words can impact another.  I don’t know that anything I write here can convey what this woman has done for me or how enormously she has influenced me and because of her influence the difference she has made to my thinking and life and by extension, my daughter’s life.

Julia lit the way.

Julia created The Loud Hands Project.

Julia, with ASAN (Autistic Self Advocacy Network) put together the must read anthology, Loud Hands:  Autistic People Speaking.  

Julia is also the editor of the just released And Straight on Till Morning Essays on Autism Acceptance.  I just downloaded this book from Amazon for $2.99 and encourage everyone to do the same!

Julia’s writing gave me insight.  She confronted me with her truth.  She makes me think and rethink what I believe, what I think I know and she has made me question everything.  This post doesn’t do her justice.  How could it?

To Julia ~ Thank you  ❤

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“Autistic People Should…”

Posted on February 23, 2013 by | 10 comments

Today is “Autistic People Should…” flash blog day!  Please take the time to read these terrific posts by Autistic people who are blogging in to change the current views by non-autistic people of what Autistic people should or should not do or be.  Autistic people are taking these three words today and making them their own.

The Autistic People Should… Flash Blog

To give all of you an idea of what comes up if one types “Autistic people should” into a google search box at the moment ~

Yeah.

This has to change.  WE can change this, all of us, together, by spreading the word, sharing the flash blog link, tweeting the posts.  Let’s help change the way we think about autism and Autistic people.  We ALL benefit when we work toward ending oppression and respecting every person’s right to exist.

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Bloggers, Writers, Autism and a Huge Amount of Hope

Posted on November 13, 2012 by | 40 comments

When Emma was diagnosed with PDD-NOS (pervasive developmental disorder – not otherwise specified) in 2004, I was lulled into believing it was a temporary condition, nothing that a few years of therapy wouldn’t resolve.  I saw it as a kind of throw away diagnosis, not exactly full-blown autism, more like a mild version of something that resembled Autism, but wasn’t.  Kind of like a bad cold, not exactly a bacterial infection requiring antibiotics, but troublesome never-the-less and we’d have to ride it out.  Besides, I reasoned, just because many of Em’s behavior looked autistic-like, seemed autistic-ish, she probably wasn’t autistic because, well, no one really understood what autism was and so how could she be labeled something that no one understood or really knew what it even meant?  Or so my thinking went.  During this initial period I kept my eye out for any Autistic adults I could find, just in case, you know, she really was autistic, I wanted to know what we might expect.  I found none and concluded that since I couldn’t find any, there must not actually BE any to find.

Still, just on the off-chance I was somehow wrong, I kept looking.  Every now and again I’d find someone, read everything they wrote or said and conclude that my daughter wasn’t really like them or wasn’t like them enough to give me much hope that they were good examples of what she might be like later in life.   (In retrospect, since Em wants to be a singer, I should have been looking for performers who are autistic, but even so, would, most likely, have come to the same conclusion.) By the way, I have never met a neurotypical adult who seemed like an adult version of my neurotypical son, but this thought didn’t occur to me for a great many years.  Despite all of this, my search continued.

In 2005 Em’s PDD-NOS diagnosis officially became “autism”.  As time went on and my thinking continued to change, Emma remained Emma with all her “Autistic-like behaviors” very much in place and I continued to grapple with what this meant.  I wasn’t one of those parents who understood that regardless of her neurology, she was who she was and it was all good.  I bought into the autism is like cancer idea, and therapy was chemo.  (This idea was very popular back in 2004, though I hope it has waned.)  It took me awhile to question this thinking and it took me even longer to see how these beliefs made any “therapeutic” program somewhat reasonable, because, after all, nobody signs up to have chemo and talks about what an enjoyable experience it is.  The idea that Autism is NOT cancer, that this thinking in and of itself leads us down a very dark and dangerous path was something I didn’t come to until much later.

Now fast forward to this morning.  This morning I read a terrific post, The Princess, Her Socks and Her Late Pass on a wonderful blog I’ve begun reading regularly by Aspie Writer called, Twirling Naked in the Street and No-one Noticed, (love that title) which she describes as “A blogged book: Growing up with undiagnosed autism”.  Reading her post about how she hated wearing socks, (so does Emma) how the fabric bunched and the seam on her toes hurt and how the socks had tiny rocks in them that no one else could see or find, kept reminding me of Em.  Aspie Writer recounts how she was always late to class and keeps saying over and over, “I have to see Mr. Hiler for my late pass.”  It is a wonderfully written description about a baffling behavior.  She does such a terrific job describing her actions and words that they made total sense to me.  Not only was I able to identify with her thinking, it gave me a little glimpse into some of Em’s seemingly baffling actions or repeated sentences.

And I was reminded (again) of why reading blogs by Autistic people is of such vital importance to me.  It’s not because I think to myself, oh Emma is going to become this person when she’s an adult.  I don’t assume that because Aspie Writer is married, a mom of 3 and a wonderful writer this will be Emma’s future.  I haven’t met a single adult, autistic or otherwise who seems to be just like either of my children.  How could I?  There wasn’t an adult version of me when I was a child and I’m certainly not an adult version of anyone else’s child.  It’s kind of a ridiculous idea when you stop to think about it.  And yet, that’s what I wanted for all those years when I was searching.  I wanted to find someone who seemed just like Emma was.  I wanted this desperately because I was so fearful of her future.  Yet, all those autistic adults who are not exactly like my daughter  are the very reason I am no longer fearful and why I have so much hope.

Blogs, both the writing of this one and finding those written by Autistics have changed my life.  Blogs are a slice of life, immediate and interactive.  I can read a post and “like” it, comment on it, even though I may or may not get a response from the writer.  I can then tweet the post out, share it on Facebook and engage in a dialogue with the writer if they care to respond.  The immediacy of blogs is compelling, engaging and makes the reader feel more apart of than when reading a book.  Books are wonderful too, but they’re different.  They do not have the interactive element to them that makes blogging so wonderful.  Blogging is very much about “us”.  We, whether as a reader or writer, have the opportunity to become part of the process, a part of “them”.  Another aspect of blogging is – anyone can blog.  You don’t need an agent, you don’t need to even write “well” (though there are many wonderful writers who also blog), you just need to want to write.  So you have a great many people who may never have bothered to look for an agent or publisher, who are writing and because it’s a casual writing form, you also find some amazingly beautiful blogs written with honesty, unedited, raw and complex.

To all the Autistic people who are sharing your stories, your words, your lives, whether by commenting or by having a blog of your own or both, here’s a very loud and heartfelt thank you!  You are making a difference.  You have changed my life.  How does “thank you” even cover the enormity of that?  It doesn’t.

Emma – 2003

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An Ode To Ibby And Her Tiny Grace Notes

Posted on September 27, 2012 by | 9 comments

My friend Ibby has started her own shiny, new, fabulous blog, called Tiny Grace Notes (AKA Ask An Autistic!  *Doing a little snoopy dance*

This is how Ibby describes her blog:  “The purpose of this blog is specifically so people can ask me things that may not come up on other blogs, which I completely recommend reading.  But let’s say you have a burning desire for the answer to a question that nobody blogs about that week?  Come here and ask it in the comments.  You can do that right now.  I might answer myself, and I might also remember that my friend told me about it a couple months ago, so I could answer from multiple viewpoints in conversation.  Also, I may be able to give you a study about it that isn’t insulting and eugenic and horrible.”

This is how Ibby describes herself:  “I’m an Autistic member of the Community and an education professor…”

Ib is an educator.  She teaches educators.  Not only that, but Ibby is patient, incredibly kind, nonjudgmental and one of the funniest people I’ve ever met.  Seriously.  (I love saying that after saying someone’s funny…)  I know Ibby’s blog will soon have more questions than she’ll have time to give, so I’ve already elbowed my way in there and asked her a question in the comments section!  If you want to ask her something go over there NOW and get in line, because I have a feeling that line is going to get pretty long, pretty quickly!

Just to backtrack a little…  Most of you have heard me talk about Ibby.  We met at a Disability Conference here in New York City where she was presenting last spring.  I wrote about meeting her ‘here‘.  It was one of those magical moments when you meet someone and you just know instantly, you just know there’s an immediate bond, an indescribable feeling of closeness that defies explanation.  That’s what it was like for me when I met Ib.  She flapped, I allowed myself to do a tiny little, tentative bounce on my toes, nothing that would call attention, (I was new to the sensation, had not allowed myself to engage in such behavior since I was a kid, but it felt GREAT!) and we hugged.

After that first meeting we kept in touch.  In fact, we began “talking” aka IMing each other once or twice a week and then we began talking several times a week.  We talked about autism, I asked her if I could ask for advice about Emma and she graciously not only agreed, but patiently explained and re-explained things I found difficult to understand.  Over time we began talking about ourselves more.  I began to talk candidly with Ibby about my guilt over the things  I’d done, the various therapies, the remedies and Ib told me more about her life.  This was a post I wrote after one of our epic conversations.  (I hadn’t asked Ib if it was okay to use her name at that point, so I didn’t.)  We found we had similar senses of humor, we went off on whole riffs together, and I laughed.  I laughed with Ib as I hadn’t laughed in a very long time.  As our friendship grew, so did my hope.  Now, if too many days go by and I haven’t been in touch with Ib I feel a little off, a little melancholy.

All of this is to say, Ibby is rare.  She’s brilliant and really, really smart, which aren’t the same thing.  You can be brilliant, but not very wise.  Ib is both.  So go over to her blog and ask her some questions, because honestly, I can’t think of a better person to go to.

Totally unrelated photo taken by Richard of Em at MOMA

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