Tag Archives: Autistic Blog

We Are Like Your Child: The Blog

*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

Protected: “We Are Like Your Child”

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An Ode To Ibby And Her Tiny Grace Notes

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