Emma's Hope Book

A Researcher Asks…

A Researcher Asks…

I speak with a researcher who says, “we need to hear the pain and needs of the parents of individuals affected by the disorder.”  She goes on to say, “Nobody else can know better what the needs of the affected person are.”  “Oh,” I say, “how about speaking with Autistic people?”  Surely they know better than any what it’s like to have once been a child.  The researcher tells me this is not their…

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Presuming Competence - Revised

Presuming Competence – Revised

Over the past few years I’ve written about presuming competence as I have come to understand it, ‘here,’ ‘here,’ ‘here,’ and ‘here‘.  Over the years my definition continues to shift or, perhaps more accurately I should say, my ability to practice presuming competence continues to shift.  I still grapple with whether I am going far enough when I  presume competence, though the simplest definition,…

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Parenting an Autistic Child

Parenting an Autistic Child

One of the most difficult things about being a parent to an Autistic child is the realization that almost everyone we parents come into contact with, when getting the diagnosis, have ideas about autism and what that means for our child, regardless if their ideas are based in fact.  So many people have theories and opinions about what autism is or isn’t.  There are endless charts and check lists…

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"Music is Language of the Soul"

“Music is Language of the Soul”

A friend of ours sent us a link to a short piece about stuttering and singing as something that has proven helpful for some.  After Emma and I read the piece I asked Emma what she thought.  Emma wrote, “Singing is the only time words come easily.”

When Emma was very young many of her therapists would sing various songs to her, but usually repeated the same ones, “Head, shoulders, knees and toes”…

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A Father’s Powerful & Extremely Personal Thoughts on Parenting

A Father’s Powerful & Extremely Personal Thoughts on Parenting

*This was what my wonderful husband, Richard wrote as a comment on my post the other day.  I asked him if I could make it a post all on it’s own.  He gave me permission…

“Pain is inevitable, suffering is optional.”

There are plenty of difficulties in life. Parenting is hard, but “childering” is harder. Parents usually have some experience in navigating the complex social expectations of the…

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Insights From a Non-Talker: Emma’s Conversation With A Friend

Insights From a Non-Talker: Emma’s Conversation With A Friend

The following is a conversation Emma, Richard and I had with a friend of ours who works at a school.  (DF = dear friend)  I have paraphrased DF’s part of the conversation because a) I cannot type as quickly as she speaks and b) she was thinking out loud at certain points, so I just wrote the gist of what she was saying. All of Emma’s words are what she typed.  Both DF and Emma gave permission to…

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The Battle…

The Battle…

“It’s all well and good for higher functioning people who have autism to talk about how unique and precious their lives are and how important it is for everyone to accept their differences, but for families who are dealing with low functioning individuals, this is not their experience.   Those families are in an ongoing battle.”  

The above is a version of a comment I’ve read countless times over…

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The Three Boxes ~ A Story

The Three Boxes ~ A Story

Emma’s story, which she edited slightly from the original:

There were three boxes that were left on three different doorsteps.  They appeared to be identical in physicality.  The size, shape, and color made them far from unique.  The way they each arrived is still unknown.  Assuming they are identical on the inside would be ignorant.

When the people opened their doors and saw the boxes left,…

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Saying One Thing, Meaning Another

Saying One Thing, Meaning Another

First – here is the video of Emma’s and my presentation at the ICare4Autism Conference on July 2nd in New York City – “My Body Does Not Obey My Mind”.

Emma ended our presentation by singing one of her favorite songs, You’ll never see me again.  We uploaded this separately and changed it from “public” to  “unlisted” as someone has…

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Using Words to Describe What Cannot Be

Using Words to Describe What Cannot Be

This morning, in answer to the question, “What shall we talk about?” Emma wrote:

Today I am going to talk about using words to describe things that cannot be described.

How can it be done?

It is the poet’s attempts that come closest, but even then, much is left to the reader’s interpretation.

Poetry becomes an interactive experience then, with the poet having to cede all control of words created.

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