Tag Archives: autistic

“No ABA”

Posted on February 7, 2014 by | 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…

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Posted in ABA, Autism, Education

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“Just Being Funny”

Posted on February 6, 2014 by | 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 by | 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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Conversing With Emma

Posted on February 3, 2014 by | 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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Henry & Emma’s Story

Posted on January 31, 2014 by | 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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Social Expectations

Posted on January 30, 2014 by | 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

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Posted in Autism, RPM, Soma Mukhopadhyay

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Questions & Learning

Posted on January 29, 2014 by | 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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Discrimination

Posted on January 23, 2014 by | 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 by | 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 by | 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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“There is Wisdom in the Echo Silence Makes”

Posted on January 20, 2014 by | 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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Emma’s “Folk Tale”

Posted on January 17, 2014 by | 50 comments

*Emma worked on this story for a week and it took many 45 minute sessions to complete.

“Once upon a time there was a duck and she bought a gorgeous pair of shoes.  She could not force her webbed feet into the lovely shoes, so she fell into a terrible depression.

“Oh what is the matter with me?” she cried.

“Her once beautiful feet now disgusted her.  The new shoes languished in her closet.  Golden hopes for her acting debut were dashed.  Without her new shoes she believed she would not be as highly regarded as she would be while wearing them.  Delightful she once was, but now no longer.

“Dawn arose like a spring crocus and she decided matters could only improve if only her feet were dainty.  Seeking the advice of an aged, old, spotted owl, she wondered if her feet could be changed.

“The ancient bird asked, “Have you always hated your feet this way?”

“No,” she said, “I have always enjoyed my wonderfully webbed feet.”

“Then, ” asked the sage, “why do you dislike them so, now?”

“Because,” she replied, “my new shoes do not fit and they are so pretty.  Could they be changed so I may wear them?”

“Yes.” Owl smiled.

Relieved to be in the company of one so wise, Duck had seen the failure of her ways.  It was not her feet needing amendment, it was her perception.

Duck's Lovely Webbed Feet

Duck’s Lovely Webbed Feet

Today is Emma’s birthday.  She turns 12.  Happy Birthday to my beautiful girl!!

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Prejudice & Autism

Posted on January 16, 2014 by | 18 comments

Emma and I have been discussing the civil rights movement and the events throughout American history that led up to it.  We’ve discussed the word segregation and what it means to a society when we isolate a group of people and how people come to form opinions about other people they’ve never met.

We have discussed the word prejudice  and how it is preconceived opinions based on an idea rather than factual.  We’ve talked about how those preconceived ideas almost always do harm.  We’ve discussed oppression and how many who’ve been oppressed internalize that message and how it changes how they then view themselves.

Emma has asked to read a biography of Harriet Tubman and we have been discussing the importance of Rosa Parks and her decision to not give up her seat on a crowded bus in Montgomery, Alabama.  We have not yet talked about Martin Luther King, Malcolm X or Thurgood Marshall, though Emma wrote that she has heard of the first two, and for all I know, may know of all three.

When I asked Emma to write something about Harriet Tubman, she wrote, “defender of freedom.”  This was a couple of months ago and I was shocked because the only time I’d mentioned Harriet Tubman to Emma was about three years ago.  I had read one of those beginning readers to Emma about Harriet Tubman before bedtime. And while I always hoped she might be listening, even if only a little, I wasn’t convinced she understood what I was reading.  This was during those years before I realized Emma understood everything.  It was during those years when I believed what I was being told, that my daughter was only able to understand the most basic concepts, and even those, it was often questioned just how much she understood.

Prejudice is when we form opinions about people, that are not based in fact. Prejudice makes us blind, it twists our minds into thinking we understand or know, even when we do not.  It can make us deny facts, or decide that what is true, is not real.

As Emma never indicated that she was listening, much less taking everything in, I often wondered.  But a couple of people had encouraged me to “act as if” and so I did my best.  I remember when I read the biography of Helen Keller and later she asked me to read it to her again.  Still, despite the now obvious evidence, I doubted and even when I wasn’t actively doubting, I wondered.  Often.  It was as though I could not make the mental leap to believe what increasingly seems obvious in retrospect.  Prejudice is like that, it fools us into believing we understand things about a group of people that we do not.

As James H. Cone writes in his book Black Theology & Black Power – “How should I respond to a world which defines me as a nonperson?”  And later in the same book, he writes, “A man is free when he can determine the style of his existence in an absurd world; a man is free when he sees himself for what he is and not as others define him.”

Emma in Colorado - 2010

Emma in Colorado – 2010

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“Be Patient With Me…”

Posted on January 13, 2014 by | 12 comments

“Be patient with me, Mommy.”

This is what Emma wrote on the airplane coming home when we were delayed yet again.  This was what she wrote after spending four hours waiting to board the aircraft, an aircraft that never took off, a plane that sat at the gate for another two hours waiting for the pilot to show up, an airplane that we then had to de-plane when that same pilot never arrived, forcing us to stand for two and a half hours in the airline’s customer care line, only to be told we would not be able to get home for three more days, oh and by the way, our luggage was nowhere to be found.  Oops.  Sorry.  Shrug.

“Be patient with me…”

There were tears and a struggle to contain the overwhelming feelings of panic and exhaustion.  Cries and fists that pummeled, teeth that bit, flailing limbs, and I was right there, wanting to do the same.  Wanting to lash out.  Wanting to scream and do something that would make it all go away.  Change reality.  Change these feelings.  Change these circumstances.  Scream.  Disappear into the screams.  Clench my jaw, grind my teeth, breathe, clench, grind, breathe, clench, grind, breathe…

“Be patient with me…”

“You’re impatient,” people have repeatedly observed and thought to tell me.  Yeah.  I know.  That feeling that begins as mild anxiety, builds into an almost impossible feeling of discomfort…  the feeling that if I don’t DO something, anything right now, I will die… that’s my impatience.  I get that now, though I didn’t always.  It used to be I didn’t know what those feelings were called, I just knew I would do just about anything to avoid them.

“Be patient…”

There’s an ongoing irony to parenting.  How many times have I admonished my children to do the very thing I lack or am incapable of?  I remember going to a parent/teacher conference at my son’s school.  He was in grade school at the time and the teacher made a comment about how he needed to work on building his tolerance for frustration.  I replied, “Yup, that’s something his mom’s still working on too.”  The teacher looked at me with surprise.

“Be patient…”  

I try.  I am trying.  But don’t use me as a model.  I’m not very patient.  I tend to be controlling too.  I don’t like when things change suddenly, I feel calmer when I know what will happen next.  I don’t love spontaneity, it messes with my sense of order.  And once I’m in overwhelm, once the feelings are coming at me so quickly, I cannot access my thoughts, it doesn’t occur to me to say to the person I’m with, “Be patient with me…”

But my daughter did.  My daughter was able to get in touch with what she needed from me during a time of heightened distress.  So who was helping whom in that moment?  Was I helping her or was she helping me?

“Be patient with me…”

Em & N. ~ 2010

Em & N. ~ 2010

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Posted in Autism, Parenting, Patience

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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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Posted in Autism, Autism Books, Blogs By Autistics

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