Author Archives: arianezurcher

Asking Questions

Posted on February 12, 2014 | 24 comments

The other day during our session about the Middle East (this post is not about the Middle East) I mentioned to Emma that I’d recently read a memoir, I am Malala written by Malala Yousafzai.  Malala is Pakistani and was shot by the Taliban when she was just 15 years old because she wanted to be able to go to school and have an education.   Emma then wrote, “Was she alive after they shot her?”

It was all I could do not to jump up and down with exuberant glee that Emma wrote me this question.  It wasn’t the specifics of the question that made me so excited, it was that it was a question at all.  You see, Emma has never asked me a question like this before.  This is the sort of question she regularly asks Soma, but not me.  In fact, I just wrote about exactly this, a few weeks ago while Emma and I were visiting Soma.  You can read that post ‘here‘.  The question Emma asked is the sort of question I’ve barely dared hope for.  It is the kind of question most people take completely for granted.  Asking a question like this is the beginning of a conversation.  It requires a different kind of thought process than answering does.  It requires initiating a line of thinking.  It is the beginning of a back and forth that we talkers do not often contemplate, but do without thinking.

I know Emma has many questions just like this one, but she is not able to easily communicate them.  This is different from in the past when I was caught in that great abyss of believing that because she didn’t ask questions, she wasn’t interested.  That old way of thinking was so detrimental to her and to our relationship.  The belief that things were not being expressed because they did not exist was so destructive, not just to Emma, her self esteem and growth, but to all of our interactions.  Instead, this was a moment of celebration.  A moment when I just sat in utter admiration of my daughter.

Presuming competence.   Those two words hold so much meaning within them.  Every day I make tiny inroads, little steps forward in presuming competence, going just a little further in my ability to stretch my thinking so that I am embracing this concept just a bit more.  And as I do my daughter is showing me over and over that I have still farther to go.  This process is one of such joy, wonder and unbridled excitement.  My husband, Richard and I discuss this all the time.  How fortunate are we that we have the opportunity to expand our awareness on a daily basis?  How exciting is it that we are in a process of constantly re-evaluating what we think we know?

“Was she alive after they shot her?” Emma asked.

“Yes!  She lived and now has written this book,” I answered, showing her the cover.  “Should we read it together?”

“Yes,” Emma replied.

Em with her string!

Em with her string!

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Posted in Autism, communication, Parenting

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What To Do When Someone Hurts

Posted on February 11, 2014 | 25 comments

When Emma was just two years old she was diagnosed with Pervasive Developmental Disorder- Not Otherwise Specified or PDD-NOS, which is the “it-may-be-autism-but-we-can’t-be-sure-maybe-she’s-just-a-bit-different-so-let’s-just-wait-and-see-what-happens-before-we-say-it’s-autism” diagnosis.  Two years later, Emma was diagnosed with autism.  But in 2004, when Emma was given her PDD-NOS diagnosis the neuroscientists, Kamila and Henry Markram, had not come up with their Intense World Theory for Autism.  The idea that Autistics have a brain that is far more sensitive to all stimuli than non autistic brains, was not something people were talking about.

Emma has since told me that she can “hear” people.  When I asked her what she meant by that, she wrote that she could sense people’s emotions and inner turmoil.  She could hear their moods.  I have been told and read similar things from other Autistic people.  This is something Barb Rentenbach also talks about in her must read, book, I might be you.  Now add to the intense sensory sensitivities that ebb and increase suddenly and without warning, lights, noise, touch, smells, tastes, feelings and you will begin to understand how overwhelming and unpredictable life can be.  Or, as Emma wrote last week, “On Monday a noise is pleasant, but on Tuesday the same noise is not pleasing to me.”

Yesterday, Emma wrote about what happens when she bites herself and the things others can do to help, as well as the things people do that make it worse and it made me think about my reactions to seeing my daughter hurt herself.  I can go through a fairly quick series of feelings.  I might feel scared, oh, no!  She’s hurting herself, this is terrible, I have to make her stop! and concern mixed with confusion, what can I do to make her stop?   But I also may feel other things too, like a desire to control the situation, annoyance and embarrassment that she is screaming in a public place, stress and overwhelm from the tears and her obvious upset, feelings of inadequacy that I should be able to help her more than I am, wondering whether I am a bad parent, believing that if I were a “good” parent, she wouldn’t do these things.  Questioning my own reactions, worrying that if I don’t force her to stop, people will harshly judge me or criticize me or believe I don’t care that she’s hurting herself.  Or maybe the situation is also stressful for me and I’m also in overwhelm.  And on it goes.  But as Emma wrote, “I know it upsets people, but it’s not about them, it’s about not being able to describe massive sensations that feel too much to tolerate.”  So if I don’t spend the time to think about and become aware of what I’m feeling as I witness her, I will react in ways that actually exacerbate her overwhelm.

I am once again reminded of my car ride with my beautiful, friend Ibby while visiting her in Chicago this past December.  I wrote about that ride ‘here.’  What Ibby did was such a perfect example of what I needed, though I did not realize I needed it and could not have asked for it, had I been asked – what do you need?  A calm, loving voice, carefully telling me what was going to happen next and why, a calm loving voice coming from someone who genuinely loves me, who I know has no agenda, was not trying to control me, whose words and concern were completely for me, with no other motivation than to truly be there for me… this was what Ibby gave me during that car ride.  Ibby did not try to take away my feelings, she didn’t try to control them, she wasn’t judging them, she was calm, patient, accepting and above all, incredibly kind and loving.  And, by the way, Ibby could not stop the noise the wind shield wipers made, it was not something that was within her control, it was snowing hard, she could not drive without them, yet even so, what she did instead made all the difference in the world.

It seems so simple, it seems so obvious, but it is actually quite rare to have someone do this for another.  So I will end this by encouraging all who want to know what they can do to help someone who is deeply distressed, examine your feelings, really look at them and make sure you understand what you are feeling before you attempt to help another, because if you’re becoming upset with someone else’s upset, anything you do will cause the other person to only become more upset.  Until I can get to a place of having “helpful thoughts of calming kindness.  Reassuring words of understanding, instead of irritation and impatience”  my response will add to the other person’s overwhelm.

*I just have to add here, this is something I find very difficult to actualize.  It is a work in progress, but it is vitally important.

Ariane & Emma ~ 2011

Ariane & Emma ~ 2011

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Posted in Autism, Parenting, Self Injurious Behavior

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Emma Discusses Biting

Posted on February 10, 2014 | 60 comments

Emma bites herself, occasionally pulls her own hair and less frequently will smack her head into the wall or punch herself in the face.  I hesitated writing about this on such a public forum because… well, because it is so public and people come to this topic with a great many strong feelings.  But Emma asked me to “put it on the blog” so I am, though with some ambivalence.  I ask that anyone who chooses to comment do so with the love, care and compassion you would hope others would have for you, were you to talk about things that are so deeply personal.  I will just add that Emma is incredibly courageous and I have nothing but admiration for her desire to speak so publicly about a topic that brings up so much distress for so many.

I asked Emma if she would be willing to discuss what is going on when she bites herself.  This is something that has happened nearly every day at her school this past week.

“I am anxious about angering those who are watching, but can’t control my aching feelings of distress.

“Biting my arm is helpful in giving those difficult feelings a pain I can control.  Getting mad at me makes it worse.

“Trying to force me to stop does not change how badly I feel, just adds to shame I already have.

“I know it upsets people, but it’s not about them, it’s about not being able to describe massive sensations that feel too much to tolerate.

“Fear takes over.

“Stress becomes impossible.

“I need helpful thoughts of calming kindness.  Reassuring words of understanding, instead of irritation and impatience.”

*I asked Emma if she could sense people’s emotions and if that added to the overload.

She wrote, “Yes, it makes it worse.”

Emma ~ 2011

Emma ~ 2011

Related Posts:

 Self Injurious Behaviors ~ Let’s Discuss

Different Neurology, Different Perception

60 Comments

Posted in Autism, communication, controversy, Parenting

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“No ABA”

Posted on February 7, 2014 | 55 comments

A few days ago I wrote about a conversation Emma had where she said she’d like to open a center she would call, “Emma’s Hope Care.”  You can read that piece ‘here‘.  In addition to writing that the center’s philosophy would be “no Autistic child left behind”, she wrote, “no behavior management.”  In response, a commenter asked Emma “What would you do to help children cope with their feelings in our society?”

I showed Emma the comment and asked her to elaborate a bit more on her words – “no behavior management” before asking if she would answer the commenter’s question.

This conversation took several sessions to complete.

A:  Hey Em.  I was wondering if we could talk about Emma’s Hope Care.  Would that be okay?

E:  Yes.

A:  What did you mean when you wrote “no behavior management”?

E:  No ABA.

A:  That was a long time ago, when you were just two years old.  We stopped when you were four.  Do you remember the ABA you had?

E:  Yes.

A:  Will you tell me your experience of it?

E:  I was treated with mostly kindness, but the therapists could not see beyond their training.  I learn quickly, but am not able to reply with words that sound right to another.

Worry becomes everyone’s focus.

Real learning happens when no one notices.

The goals waste away.

Tender feelings do not hurt, but are not helpful because they cannot soothe wounds of being constantly underestimated.

During a separate session Emma answered the question, “What would you do to help children cope with their feelings in our society?” from the Conversing With Emma post.

First cope with your own feelings.  Second listen to the child.  Provide them with patience, accepting their feelings as valid and respecting that this will change as they grow older.

Emma during the ABA years...

Emma during the ABA years…

55 Comments

Posted in ABA, Autism, Education

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“Just Being Funny”

Posted on February 6, 2014 | 20 comments

Last week Soma and Emma discussed different proverbs.  Soma explained that one of the proverbs was about how a new person can be very enthusiastic upon getting a new job, eager to prove their worth they do a great deal, but as time goes on they lose some of their enthusiasm and do not do as much.  Emma then wrote, “It is like a new husband.”

When Soma asked her to say more, Emma wrote, “Just being funny.”

And she was.  Really funny.  In fact, I burst out laughing.   One of the great things about someone who says the unexpected is that it often is very funny, and that she also intended to be so, makes it all the more joyful.  (There is nothing more upsetting and hurtful to the other person than laughing at something that strikes you as funny, only to realize the person speaking did not intend or mean to be funny.)

I cannot anticipate what Emma will write.  The way she phrases ideas and thoughts, even questions are unexpected.  I am biased, I know, but I see her way with words as one of her many, many talents.  The beautiful and unexpected way in which she will phrase a thought or express a feeling fills me with emotion. I am in eager anticipation and gratitude for every word she writes.  I sit and watch her and am mesmerized.  There are few things I enjoy doing as much, truthfully.

At the moment Emma’s two favorite songs are Clint Eastwood by the group Gorillaz and Cage the Elephant’s Ain’t No Rest For the Wicked.  Like me, when Emma likes a song she will play it over and over and over.  When I was a teenager I wore out record albums (yup, that’s how old I am) from playing the same favored song repeatedly, causing the album to get scratched from my insistence that only the one or two songs be played and not the record in its entirety.  Dancing to those favorite songs is an added bonus.  Emma loves to dance and so do I, something my husband loves doing as well.  Listening to music requires no speech; no words need to be exchanged.  Given how hard Emma must work to write her thoughts, it is nice to do something we all love, that isn’t hard work.

Yesterday Emma and I were discussing death, something Emma speaks about regularly in repetitious utterances about various pets and people who have died.  We have talked about death before, but this time Emma wrote a sentence that I couldn’t make sense of.  It was at the end of a 40 minute session, so I figured she was tired and we’d come back to it later.  Since our time was up, I left the sheet of paper with Emma’s sentence on it, on the table.  This morning, just before I left for work, I reread the sentence.

“Hysterical rant on death is assuring story, but does nothing to understand reality of story.”

And I began to wonder whether her spoken phrases, “Bertie died, Bertie has to be careful.  Yeah, Bertie got old.  Bertie lay down and went to sleep.  Bertie died…” about my very old cat who was seventeen when he finally died, is a kind of calming self talk.  Perhaps a way to make the unknown less frightening and yet she still knows that even in trying to soothe her fears, the repetitive talk does nothing to help her understand.

So this afternoon, I will ask her and afterward we will listen to Gorillaz and Cage the Elephant and dance.

Dancing ~ 2012

Dancing ~ 2012

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Posted in Autism, communication, Parenting

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“Why is my Mind Autistic and Yours is Not?”

Posted on February 4, 2014 | 22 comments

Yesterday Emma wrote, “Why is my mind autistic and yours is not?”

That sentence took over two minutes for her to write.  I say this as a factual statement so that people reading this have a better understanding of the enormous effort and energy it takes for my daughter to communicate.  If it took everyone a few minutes to communicate a single sentence, perhaps we would be more thoughtful about what we said and wrote.  Two minutes.  With someone like Soma, Emma is able to write much more quickly, but I am fairly new to this (I’ve been working with Emma on an alphabet board on a daily basis since the end of September) and so with me, it takes longer.  With someone else it may take even longer still, or she may not be able to write more than a single word.   But the more salient point is, that sentence is gold, and worth every second it takes for her to point to one letter at a time to create words and then whole sentences.

Until we found this way of communicating, we were left guessing about Emma’s likes and dislikes, what interested her, what she was curious about.  And while there were a great many things we knew or believed we knew without her telling us, there was also a great deal more that we did not know or understand.  For example, I was astonished to learn last week that Emma was curious about Africa and wanted to know why so many of it’s inhabitants are poor.  Later I asked her if she’d like me to read about an African photojournalist, Echwalu, whom I love and whose blog I follow, Echwalu Photography .  She said she was interested.  We have since begun subscribing to National Geographic and I am now reading articles from the New York Times to her.

“Why is my mind autistic and yours is not?”

So I did my best to explain that no one actually knows the answer to that question.  I explained that most people believe genetics plays a role and that though I am not autistic, I do share a great many “autistic-like” traits.  I went on to explain that there is more about autism that is unknown than there is known and then our session time was up.  Emma went to listen to music while I thought more about her question, and resolved to read to her the Markram’s, Intense World Theory.  I thought about how our brains differ, but also how much they are alike.

I thought about how relatively easy it is for me to communicate and how I take most of my communication for granted.  In fact there is so much I take for granted.  I thought about how easy some things are for Emma, things that I am not able to do, like singing on key, being able to remember a melody and imitate it note for note.  Her ability to absorb knowledge without having been taught, like multiplication, division, vocabulary words, to name just a few.

This idea that Autism is a massive list of deficits needs to change.  The truth is we, non Autistics know almost nothing about Autism and what it means to be Autistic.  In fact, the human brain is constantly astonishing neuroscientists.  To say we understand or know without a doubt what any one of us is able to do is to underestimate, not just ourselves, but everyone else too.

Emma ~ 2012

Emma ~ 2012

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Posted in Autism, communication, Parenting

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Conversing With Emma

Posted on February 3, 2014 | 27 comments

I asked Emma if I could write about a conversation she had with Soma last week.  She told me I could.

Emma told Soma she wanted to open a day care center.  When Soma asked her what she’d call it, Emma wrote, “Emma’s Hope Care.”  Soma then asked what the philosophy of the center would be and Emma wrote, “No Autistic child left behind.”  And then a little later Emma wrote, “early education” and “no behavior management.”  Soma asked Emma where this center would be located, Emma wrote that she intended to have several, but that the headquarters would be in Chicago.  I smiled when she wrote that as my brother and his wife live nearby as does our friend Ibby, or as Emma calls her, “Ibby from Ibbia”.  Emma also said there would be a center in New York.

This was an easy back and forth conversation, with Soma giving her thoughts about things then asking Emma for her thoughts or Emma volunteering her opinion without being asked. Emma pointed to letters on a laminated alphabet board while Soma spoke, and on it went.  It was an example of something most speaking people take for granted.  We do not think twice about exchanging an idea with another, asking questions about things we don’t understand, listening to the other person, formulating an opinion, discussing, perhaps disagreeing, but in the end each person coming away with more information than they had before entering into the conversation.

I was fascinated to hear that my daughter knew about the “no child left behind” bill, passed by the United States Senate in June of 2001 and signed into law in January, 2002.  I also wondered if her comment, “No Autistic child left behind”,  was said with a touch of irony and humor, perhaps even sarcasm, as the current situation in so many special education schools in New York City, both public and private, are leaving a great many Autistic children behind.  In fact children, like my daughter, are regularly put into classrooms where a high school diploma is not a given, much less a goal.  Not only has Emma told me she wants to get a high school diploma, but she intends to go to college as well.

But what I loved most about what Emma wrote was her obvious compassion for others and her desire to do good.  Last fall she wrote about wanting to visit “old people” and then added, or “people in a cancer hospital.”  Funny how when you listen and watch what Autistic people are saying and doing, it is not in keeping with what so many non autistic “professionals” are saying about them.

A completely unrelated photograph of Emma holding Teddy.

Emma holding Teddy

Emma holding Teddy

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Posted in Autism, Education, Parenting

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Henry & Emma’s Story

Posted on January 31, 2014 | 7 comments

Yesterday Emma and I spent time with our friends Lauri and her son Henry.   Lauri has a wonderful blog, Ollibean, which is a model of  inclusion and what that really means.  Recent posts include Judy Endow’s How to Figure Out if an Autistic Needs Fixing, Amy Sequenzia’s Walk in my Shoes, and Henry Frost’s All the People Saw my Intelligence.

About a year and a half ago I interviewed Henry regarding his wish to be allowed to go to his local school.  Because Henry cannot speak and is Autistic, he was denied that right.  That interview was published on The Huffington Post ‘here‘.  And a follow-up post ‘here‘ because the piece went viral.  I also wrote about staying with Lauri and her family last spring ‘here‘, which was also when Emma and Henry became friends.

Henry and Emma wrote this story together, taking turns writing a sentence by pointing to letters on an alphabet board.  Henry is “H” and Emma is “E”.  (I know … that’s probably pretty obvious…)  Afterwards Henry and Emma gave me permission to publish their story here.

H:  Once a man went to the king.

E:  He had a complaint against his horse.

H:  His horse would not carry him any more.

E:  His horse wanted five dollars each ride.

H:  The king asked him to sell the horse.

E:  The horse said it is not a slave.

H:  The king asked the horse its price.

E:  The horse said it needs a million dollars.

H:  Finally the king gave two options to the horse.

E:  First was – fight a lion.

H:  Second is –  serve this man.

E:  Choose between the two.

H:  Question is – what will he choose?

E:  The End

Henry & Emma ~ January 30, 2014

Henry & Emma ~ January 30, 2014

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Posted in Autism, communication, friendship

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Social Expectations

Posted on January 30, 2014 | 24 comments

Yesterday there was some discussion about accepting and rejecting social rules.  Asked to talk about the rules she would reject, Emma wrote four that she would prefer were not required and expected of her.  When we returned to our hotel we discussed this further and Emma slightly amended what she’d written and added one to the list she’d made during her morning session.  I’m guessing there are additions to this list, but these sessions are exhausting and I didn’t want to push for more.

1.  “Giving eye contact when I don’t want to.”

2. “Being expected to answer verbally.”

3. “Being happy when I don’t feel up to it.”

4. “Keeping my body still”

5. “Trying to be Temple Grandin”

When Emma wrote “being happy when I don’t feel up to it” Soma asked, “do you feel social pressure to be happy?”  Emma wrote, “Don’t you?”

So here’s my question to all of you…  if you could change a societal expectation, what would it be?

Oh, and this is the eagle Emma drew after her last session…

Emma's Eagle ~ January 29th, 2014

Emma’s Eagle ~ January 29th, 2014

24 Comments

Posted in Autism, RPM, Soma Mukhopadhyay

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Questions & Learning

Posted on January 29, 2014 | 8 comments

“Did you see the Grammy’s?”  Emma asked Soma yesterday.

And as I sat nearby watching, I marveled at how surprised I was by this question.    In part because she was asking a question, something Emma does a great deal of when she is working with Soma, but not so much with me yet.  I can’t tell you how much I look forward to that…

My surprise was not just limited to the fact that she was asking a question though, it was also because I often wonder how she knows all the things she knows.  “The Grammy’s?” I found myself thinking.  “How does she even know about the Grammy’s?  Where did she see anything about the Grammy’s?”  “Richard and I didn’t watch the Grammy’s.  I can’t even tell you when the Grammy’s were.

After Soma told Emma that she had watched the Grammy’s, Soma asked Emma where she’d seen them.

Emma wrote, “At the airport TV.”

The airport TV?  Seriously?  I didn’t even see a television, let alone notice what was on.  When we arrived at the airport we checked our bag, went through security and went looking for our gate, and when we finally found it, I don’t remember seeing a television anywhere near the seats we finally found to wait for our flight.   What else has she seen in passing?  What else would she like to know about?  What things would she be interested in learning about?  

I write all of this, because Richard and I often ask each other, “But where did she learn that?”  or “How does she know about that?”  And, well…  this is, but one answer.  There is information everywhere and my daughter is picking up information all the time.

I used to assume there was an input issue with learning, but my daughter continues to defy this idea.  An output issue?  Yes.  Input?  Evidently that’s my issue, not hers.

*Emma has given me permission to publish this on the blog.

Emma ~ January 29th, 2014

Emma ~ January 29th, 2014

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A Short Interview With Emma

Posted on January 27, 2014 | 50 comments

This is a short interview I did with Emma this morning about speaking, writing, and words.  

Ariane:  Do you have an inner dialogue?  You know, where you have a running conversation in your head?

Emma:  I do not think in words.

Ariane:  So that must make it hard to articulate what you are thinking and feeling.

Emma:  Yes, it is frustrating.  I am often unable to express myself even in writing.

Ariane:  Any suggestions for those of us who think in words?

Emma:  Do not think so much.  Empathy and love are not conveyed with words.

Texas ~ September, 2013

Texas ~ September, 2013

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Discrimination

Posted on January 23, 2014 | 35 comments

In Emma’s RPM session yesterday with B. on the topic of discrimination, Emma wrote, “Autism voices have been silent.” (Emma initially typed “silenct and then she edited that to “silent”.)   B. encouraged her to write more, asking her what she suggested.  Emma wrote, “take time to try and learn from us instead of staring at us like we are garbage.”

When she wrote the word “garbage” I felt sick to my stomach. This, from my twelve-year-old daughter.

I remember when my father would call me into his home office to scold me for my latest infraction.  I remember the shame I felt.  I still remember the tingling feeling of rebellion mixed with self-doubt when I noticed the disapproving stare of a stranger upon seeing my outfit – a crop top and pair of cut-offs that I’d smuggled into my backpack to wear to go shopping with a friend after school.   There was shame then too.  But stares like I’m garbage?  No.  I don’t know what that’s like and yet, my twelve-year-old daughter does.  Twelve years old.  Evidently she knows this feeling all too well, as there was no hesitation when she wrote that sentence yesterday.  It wasn’t like she had to stop and think about her answer.  She didn’t pause before pointing to the letter “g”.

“take time to try and learn from us instead of staring at us like we are garbage.”

B. had been talking about Martin Luther King.  She had spoken of the civil rights movement and quoted a few things Martin Luther King said.  Emma immediately wrote about autism.  No hesitation there.  I can’t really console myself with the idea that racism and discrimination are no longer an issue in the United States and therefore the prejudice Autistic people encounter will change any time soon as well.  The language has been cleaned up, people know not to use certain words, but the feelings, the feelings of bias, the violence that prejudice and oppression encourage continues.

“take time to try and learn from us instead of staring at us like we are garbage.”

Emma ~ 2010

Emma ~ 2010

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Posted in Autism, human rights, prejudice

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Stem Cell Treatments

Posted on January 22, 2014 | 26 comments

“You thought my autism was hurting me and that you needed to remove it, but you did not understand that it is a neurological difference and fear caused you to behave with desperation.”  ~  Emma on the topic of the three stem cell treatments we did in 2010

Every now and then people find this blog through a site that promotes stem cell treatments in Central America.  In our long and twisted journey since Emma was diagnosed with autism, stem cell treatments were something we once hoped would help our daughter.  It is a decision I deeply regret.  People ask me whether I think it may have helped her.  I do not.  People have wondered whether the tremendous strides Emma has made are not directly related to those stem cell treatments.  They are not.  I can say this with assurance.   If you want to learn more about how Emma is communicating, click on this link.  The stem cell treatments put Emma’s life in danger.   We have no way of knowing what we may have exposed her to because of those treatments.  For the rest of our lives we will not know if the stem cell treatments harmed her.  We will never know and that is a fact we must live with.

In April of 2010, we believed anything was worth trying if it would help our daughter.   Just four years ago, I believed being Autistic meant a life of untold misery.  Autism was a list of deficits.  At the time, I doubted whether my daughter would be able to learn to read and write, let alone speak in a conversational manner.   I had no idea what my daughter was capable of.  I had no idea that she already knew how to read.  I know this now because she has told me through her writing.

We took Emma to Costa Rica and later to Panama for three rounds of stem cell treatments despite being strenuously urged not to go by a team of stem cell researchers out of Harvard.  We were cautioned about the experimental nature of this procedure.  We were told it was risky, dangerous, highly invasive, and yet we made the decision to take her anyway.  We did this because we loved our child and, at the time, believed anything we tried was worth it, if it might “save” her.  (I use that word purposely because this was what we once believed.)  We believed we were giving her a chance at life, we believed, if we did not try this, we would regret it.  We held out hope that maybe, just maybe this would help her communicate and thereby give her the opportunity to form friendships.    

I’m not going to go on a rant about all the misinformation we were given by well meaning professionals, educators, medical experts and pretty much every single person we came into contact with on the subject of autism and our daughter, all of that is pretty well documented throughout this blog over the last year and half, but I will say this, our response to autism and what we believed that meant for our daughter was not unique.  We knew of a great many parents who believed just as we did, that any treatment was better than doing nothing at all.

This blog began as a result of those stem cell treatments.  I never thought more than a handful of people would read what I was writing.  This blog was a way to document the changes we hoped we would see because of the stem cell treatments, a treatment that is not allowed in the United States, a treatment that has since been outlawed in Costa Rica as well.  We believed we were doing a good thing.   For those of you who never contemplated such drastic measures, I understand how incredible this must sound.  For those of you who are Autistic, I can only tell you how sorry I am that this was what we once believed.

We all make mistakes.  Some of us have made terrible ones; things we cannot undo, take back or cancel out with an apology, no matter how heartfelt.  What I can do is continue to learn, hope to do better, and do all I can to counter that list of deficits so commonly attached to an autism diagnosis, while signal boosting Autistic people’s words, including my daughter’s.

Last night Emma and I discussed those stem cell treatments from four years ago and she wrote the words I opened this post with.  When I told her that if I could take those treatments back, if I could cancel them out, I would, in an instant and without hesitation.   She then wrote, “Many parents have not loved their children as much as you.”

This isn’t about forgiveness, I know she forgives me, this isn’t about publicly beating myself up, this isn’t about me learning to forgive myself, this isn’t about me at all.  This is about misinformation, where that misinformation leads us and the inherent problem with speaking about autism as a “medical disorder” as opposed to a neurological difference; a difference that carries assets and deficits just as non autistic neurology does.  This is about oppression, segregation, prejudice and how that plays out in every aspect of autism, autism research, autism treatments, biomed interventions and almost all of the various autism therapies that currently exist.

“Put it on the blog!” Emma said, after we talked about all of this.  

“Really?  You want me to put this on the blog?”

“Yes,” she said and then she leaned over, gave me little kisses and added, “Aw… sweetheart…”

Emma walking among ruins in Panama ~ 2010

Emma walking among ruins in Panama ~ 2010

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Posted in Autism, Parenting, Stem Cells

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“Voices”

Posted on January 21, 2014 | 11 comments

The Halo Center has published a little pamphlet of Autistic people’s writing. It’s called “Voices” and this year’s issue – “Voices” 2013 edition –  is available for purchase ‘here‘.  One of Emma’s fabulous folk tales is in it, along with dozens of others.  For anyone who is even remotely interested in Soma Mukhopadhyay’s Rapid Prompting Method or RPM, it is a great sample of the writings of a wide range of people of all ages who do not rely on spoken language to communicate, but who write to communicate.

“Butterflies used to be sticky as butter.  But they had curiosity.” ~ Emma

I am not going to reprint Emma’s entire story here as I hope some of you will go over and purchase a copy.

Soma and RPM have completely transformed our lives.  It is my dream that every school, every educator, every therapist, and all people who are in the field of autism have the opportunity to witness someone like my daughter writing her thoughts on the letter board.  Eventually Emma will write on her iPad and computer, but for now she is using a laminated letter board with me, her iPad with the person she sees here and the laminated board, which she even holds herself at times, with Soma.

A Session With Soma

A Session With Soma

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Posted in Autism, communication, Soma Mukhopadhyay

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“There is Wisdom in the Echo Silence Makes”

Posted on January 20, 2014 | 28 comments

“I want to talk about autism, but I am dear-like because badly needed information is angering.

Assuring many people understand about neurology they do not have is difficult.

I want the world to have another opinion to work with.

I am happy but people find that impossible to believe.  That causes me anxiety.

Acceptance and kindness are crucial for all people.  As one who is constantly thought less than, forgiveness is like a soothing bath and the talking people might learn more if they did not talk so much.

There is wisdom in the echo silence makes.”

Emma just wrote this.  She asked that I put it on the blog.

“There is wisdom in the echo silence makes.”

It turns out we are living with the buddha.

Emma ~ 2004

Emma ~ 2004

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Posted in Autism, communication, Parenting

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