Category Archives: friendship

Friendships

Posted on December 2, 2014 by | 10 comments

“Both of us writing this post is fine.  We are working together,”  Emma typed just now.

But first a short explanation is needed:  Twice a week Emma has an in person typed “chat” with her friend, Joey.  Yesterday’s chat was a little different because the person Joey usually writes with on Mondays was ill, so I asked Joey if he’d be okay with me holding the keyboard for both him and Emma.  He gave me the go-ahead and so I alternated between them, each taking a turn to type.

During their chat, Emma did what she often does, which is talk out loud.   Often she will talk about things that happened in the past, as in, “Maddy needs to sit down.  Maddy wasn’t nice to Emma” or it can be about the future as in, “chat with Joey,  get groceries, German, Math, Skype call with Granma, see Daddy, have dinner, sleep, wake-up, Skype call with Dr. C….” Emma wrote, “When my brain gets busy it remembers things that have been said to me or what I have heard.”  I wrote about this recently – Scripts – A Communication Bridge

As Emma and Joey typed with each other, Emma said aloud her nickname for Joey – JoeyAllison.  This is a nickname Emma came up with a few months ago when Joey unexpectedly appeared in the same place that someone named Allison had been, the last time we were in the building.

What follows is their chat, which they both agreed to share on this blog (I added punctuation to clarify with Emma’s approval):

J:  I begin this, you go next, not Monday schedule threw me.

(J. has a daily schedule and his and Emma’s “chat” wasn’t listed for Monday.)

E:  How was your thanksgiving?

J:  Good food I like, how about yours?

E:   Thanksgiving in two parts is the best way to celebrate holiday of gratitude.

(Emma kept saying out loud “JoeyAllison”)

J:  Liking nickname not much, but tolerating since hoping you will find another more likable.

E:   Joeyallison is etched into my brain, so hard to overwrite, but I will try.

J:   Knowing you make an effort helps, thanks.

E:  I don’t mean to hurt your feelings.   It’s meant in friendship.

Later Joey’s mom told me Joey’s middle name, which is oddly similar to the name Emma has taken to calling him.  I told Emma what his middle name was and she said it out loud several times, as though she were trying it out and then said, “good.”  Then she typed, “I will call Joey by his first and middle name to his face, if my mouth obeys, because he’s my friend while secretly saying JoeyAllison to myself.”

Friendship

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Posted in body/mind disconnect, Compassion and Autism, friendship

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“Social Impairment”

Posted on March 19, 2014 by | 12 comments

“Autism spectrum disorder (ASD) is a range of complex neurodevelopment disorders, characterized by social impairments” ~ NIH (National Institute of Neurological Disorders)

When I first learned about autism, as defined by many organizations, I understood it to be a “disorder,” with “social impairments” being one of its defining characteristics.  As autism was also spoken of as meaning someone who did not and could not understand others, and that the very word “autism” stemming from the Greek word “autos” or “self”, suggested a person who had little interest in other people, I assumed this meant my child didn’t care about or want to make friends.

Add to this the unfortunate wording of what so many of our kids engage in – “self stimulation” – which to my ears anyway sounded vaguely  masturbatory, and as we live in a society tending toward the puritanical, self stimulation, even to my liberal notions, carried with it a decidedly negative connotation.  The word “stimming” is a bit better, but even so, I cannot get away from the sense that this feeds into those negative assumptions about intent and a lack of interest in connecting with others, which is still believed by a great many.

When my daughter described stimming as “self-care” (you can read that post ‘here‘) I  was filled with admiration.  Self care is such a wonderful way to describe what I see her doing.  Self care is not about rejecting others, but instead describes a way of regulating oneself so that one can engage with others.  This idea that autism means disinterest in other people, an idea so many have embraced, does not describe my daughter at all.  To the contrary, my daughter and so many of my friends who share her neurology care deeply and take tremendous pleasure in their various relationships, just as those who are not autistic do.  (That this last sentence is even necessary to write, demonstrates how far we have to go.)

This idea that autism characterized by “social impairments” is something that drives me crazy.  It isn’t a social impairment.  It’s a complete misrepresentation and misunderstanding of what autism means to those whose neurology is called autistic.  My daughter does not lack a desire for friendship or have a disinterest in other people.   Unable to often communicate what she intends, constantly distracted by things others cannot and do not necessarily see, hear or feel and a need to move her body in ways others misinterpret, it is no wonder “friendships” present a whole series of issues for her.

So many of the assumptions about autism, based on what non autistic people witness and believe they are seeing and the theories they then develop supporting these assumptions continues.  Assumptions, spoken of as though fact, with therapies devised to “help” what is assumed to be true and yet, is not, is based on a false premise.   But when we were given Emma’s diagnosis, I did not question these various theories.  I, as did so many others, took them at face value, believing that though there was much we still did not know about autism, these beliefs at least, were some of the things we DID know about autism and by extension autistic people.

Oh how wrong I was…

Emma holding Teddy

Emma holding Teddy With her String

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Posted in Autism, friendship, Parenting

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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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Posted in Autism, communication, friendship

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Travel, Friendship and Sensory Overload

Posted on December 16, 2013 by | 34 comments

A couple of days ago my friend Ib, of the blog Tiny Grace Notes, whom I was staying with, drove me to the airport.  Ib knows me pretty well and could tell I was nervous, as I have become increasingly as I get older, about getting to the airport, going through security and making my flight, even though we were leaving ample time to do all of that.  Still the combination of nerves due to traveling, my busy work schedule, being away from my family for so long, being tired and going to an unfamiliar airport had me on high alert.

It was snowing a little so we needed to have the window wipers on or Ib wouldn’t be able to see well enough to drive safely.  But the wipers made a scraping noise that I found almost intolerable.  Every time the wipers ran across the window they vibrated and made a noise that was akin to finger nails being raked along a chalk board.  It was jarring and I could feel my body tense, so I gritted my teeth and began an internal dialogue with myself to try to calm and as I did all of this, I thought of my daughter.  I thought about what it must be like to be bombarded with sounds and sensations that she cannot speak of, or if she does speak of them, the words that she speaks are not what she intends to say, so people are left confused, asking questions or simply ignoring.

As we drove and Ib, being Ib, had already sensed my tension and anxiety and was doing everything in her power to take care of me, I thought about how it is only recently that I’ve become hyper aware of certain sounds, sights, tastes, smells, and how things feel to the touch.  It is because of my daughter and other Autistic people I’ve met and/or read and heard speak about such things, that I have begun to see how, things I once learned to ignore are now things I cannot ignore, like those window wipers scraping against the window and making me so upset it was all I could do to sit quietly and not begin to cry.  I am grateful for this as it makes me far more understanding of what my daughter and others might be going through at times.

Ib began to very quietly and gently tell me what she was about to do, before she did it.  So, for example, she would say things like, (I’m making this up as I can’t remember her exact words now) “just up ahead I’m going to slow a little and get into the right lane” or “the exit we want is in another 2 miles to the left” or whatever it was, she would say these things in that lovely, mellifluous voice of hers and I began to calm down.  Ibby was modeling, actively demonstrating what I need to do for my daughter.  She was also being a kind, sensitive and deeply compassionate friend to me and I sat there, my eyes fixed on the traffic around us, feeling so thankful that I know her and am friends with her.

As we drove along and I began to relax a little, I imagined a place where non autistic people would go where they would be given the very real experience of what it might be like for an Autistic person.  I fantasized that there would be all manner of sensations, highly elevated and constantly changing as examples of what might be another person’s experience of daily life.  Just as I found those window wipers so harsh and grating that I could not engage in conversation, I imagined that this place would both bombard the person as well as under stimulate so the person could experience what it is like to alternate between not being able to hear, taste, see, feel, smell and during all of this, demands would be placed on the person.  Not just demands, but the person would be required to answer questions within a specific time frame and if they didn’t answer or got the answer wrong they would be required to go back and start all over again.  However regardless of whether they got the answer right the sensations would remain, the things they would try to do to calm themselves would not be allowed or taken away and they would be forced to stay in this place indefinitely.

As Ibby helped me retrieve my bags from the car I felt tremendous relief knowing that I would be able to manage the curbside check-in, knew I would not lose the ability to speak, knew I would be able to find the correct line to go through for security, find the correct gate and wait for my flight.  All the things I do without thinking, without questioning, things I take for granted.  But I also was aware that this relief is not what others, others like my daughter, necessarily experience.

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Posted in Autism, friendship, travel

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Friendship – Another Myth Regarding Autism

Posted on April 16, 2013 by | 21 comments

My friend Ibby is here staying with us for a few days.  It’s a working visit, but that doesn’t take away from the joy we are all experiencing because she is here.  Who says work cannot also be a blast?

Emma and Ibby 

Em and Ib

I’ve spoken of Ibby many times on this blog (here, here, here and here to link a few) because Ib has, more than any single human being, done more to change my views regarding autism and my daughter than any other person.  I know that may sound hyperbolic, but it’s actually not.  It’s true.  Or as Ib would say, “Fact.”  And it is.  Fact.  Another fact is the gratitude I feel toward her.  Just tremendous gratitude for opening my eyes, not just to one thing, but to multiple things.  As an example, here is just one little thing that happened as a direct result of Ib.

Ib gently urged me to watch the documentary Wretches and Jabberers.  When I did not immediately watch it, she reminded me and again encouraged me to rent it.  I think she had to remind me three times, before I actually sat down and watched it.  And because I watched W& J, when I presented at the Autcom Conference last fall I went to hear Harvey, Tracy, Pascal and Larry’s presentation on supported typing and because I went to that presentation I had the idea that maybe, just maybe it might be the thing that could help my daughter communicate more reliably and because I had that idea I approached Pascal and asked if he was ever in New York City and because I asked him that, Pascal began helping us learn to support Em and because we started helping support Em I began to understand what presuming competence really meant and on it goes like the “If You Give a Mouse a Cookie” books, one thing leads to another and another and suddenly you look back and see that this person, this one person has influenced another (me) and the ripple effect is so far-reaching and beyond anything anyone could have imagined.

The Wretches and Jabberers example was just one example of one tiny thing Ib had a hand in.  I could name at least a dozen or more much larger examples, like the conversation (documented ‘here‘) we had about language and my daughter’s specifically and how sometimes she says things that seem completely unrelated to anything that’s going on, but how it is related, even if it’s not related in any way I can identify.  Sometimes it’s a leap-frog kind of association, often there’s an emotional component too, so when she suddenly blurts out, “No not going to see motorcycle bubbles” I now know Em is thinking about visiting her Granma in Colorado or is anticipating an electrical storm or watching the 4th of July fireworks display from the ranch. There’s excitement and maybe some anxiety and even fear and eager anticipation.   I know this now because Ib has helped me understand and has taught me how to “lean into” her words and not try to do a word for word translation.

Ib and I have been working on a book together about Autism, Inclusion and Friendship.  As a result I am thinking a great deal about friendships and relationships in general what they mean and how they develop and how the very definition of friendship is about inclusion and support and accommodation and giving each other slack and cheering each other on and appreciation and gratitude and being there for the other person.  It’s a mutual give and take and it’s reciprocal.  Relationships are basically what make this world and life worth living.  Ironically friendship was the thing I wrote about on this blog’s first entry.  It was what I wanted my daughter to experience, but feared she might not ever have, because I believed what I was being told about autism and that myth surrounding autism and being alone.

Over three years ago, when I started this blog, I wrote, “…hope that we may help our daughter Emma, now 8 years old, lead a life that includes deep friendships and the powerful bonds that result from being able to communicate with one another.  A life that is enriched by our interactions..  this is what I dream of for her..”   Who knew that not only would my definition of what constitutes “communication” completely change, but so would my mistaken ideas about my daughter’s ability to have friendships.  As an added plus Ibby is not only in my life, but in my entire family’s!

So yeah, Ib is really important to me.  I love her dearly; we do all the things friends do when they get together: confide in each other, laugh, hang out without having to talk, hang out and talk and talk and talk, cry, and when we aren’t physically together we stay in touch.  But as with all really close friends, Ib is in my mind and heart regardless of where she is.  I think about her and when we haven’t spoken for a few days we reach out to each other and connect, sometimes briefly if we’re both busy, but she’s always “here” in my heart.

As Ib has said, “Friendship is Fact.”

Vanilla cake with vanilla icing – made by Emma, Nic and me 

Ib's Cake

 

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Posted in Autism, Elizabeth J. Grace, friendship

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“Nearly Every Moment…”

Posted on November 14, 2012 by | 22 comments

My friend Paula Moerland allowed me to post this.

“Nearly every moment of my existence
Has been filled with the necessity of caring for this body
This emotional body, so distraught
This mental body, so busy
This physical body, so out of balance
Always

I am not selfish

I am exhausted”

When I first read this I had to close my eyes and sit very still.  And as I sat, I remembered something my father said to me so many years ago when he was in a wheel chair. He told me constant pain was exhausting.  I was surprised by this.  I had never before considered what it must be like to be in constant pain.

None of us are getting out of here alive and while we live our lives there’s going to be pain, but some people have to endure terrible suffering.  Too awful for most of us to fully understand or even know.  All of us know someone who has dealt with inordinate pain and yet somehow managed to find a way to transcend it, or used it to create something magnificent.  Those people are guides.  I hear their stories and am in awe of their ability to cope with physical and mental abuse often at the hands of those they should have been able to trust, the very people who should have been there to comfort them, to care for them , but instead turned on them.  Yet despite those wounds they are trying to transcend it, they have the desire to rise above it, not give into it.  There is tremendous power in that.  We humans have an astonishing ability to not only endure, but create astonishing beauty.

Thank you Paula for sending me your beautiful words.

New York City in October

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Posted in Autism, disability, friendship

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Fears Reduced to Nothing

Posted on July 10, 2012 by | 13 comments

Even though Emma and I traveled all day yesterday to get back to New York City, even though all kinds of things went through my mind as we spent the four-hour layover walking the entire length of the Denver Airport THREE times, in search of the ever elusive Nestle’s Chocolate milk, because no other chocolate milk will do as far as Emma’s concerned, even though I have a number of things I could say about all of that, I’m not.  Instead I’m posting these photos taken our last day and night in Aspen.

Because it was so wonderful to witness Nic and three of his friends being so great with Emma.  Because the last photo in particular piggybacks on, so beautifully to yesterday’s post about all my fears regarding Emma and neurotypical kids.  Because so often fears have nothing to do with reality.   And because I need to be reminded of that.

Emma on the Hunt’s trampoline 

A young buck in the field right outside my mother’s house

Emma,  the Hunt boys, Nic and Jack playing “Dead Man, dead man”

 

Emma, Nic (doing a flip), Ethan and Jack 

Emma was intent on jumping on the trampoline with Nic, the Hunt boys and their friend Jack, but none of them wanted to go.  It was already dark out, it had been raining, the trampoline was soaking wet, they were having fun rough-housing, it was unanimous, not one of them wanted to go.

Emma:  You have to ask.  Nicky, do you want to go on the trampoline?

Nic:  No, Em.  No. I don’t.

Emma:  Ethan do you want to go on the trampoline?  Yes?  Or No?

Ethan:  No.

Emma:  Say YES!

The boys start laughing.

Emma:   Yes, you do want to go jump on the trampoline.

Ethan:  Looking unsure, but smiling at Emma.  Well…

Emma:  C’mon, let’s  go!

And they did.  They all traipsed outdoors in the dark and they had a blast.  Emma was ecstatic.

And so was I.

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Posted in Aspen, Autism, friendship

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Expectations and My Reluctance To See What Is

Posted on May 30, 2012 by | 17 comments

Emma’s sleepover came with some fallout.  I suppose that is to be expected. Emma had a blast , so what’s my problem?

My fear.  My expectations.  These are the issues that plague me.

I watched Emma burst through the front door.  I saw how she didn’t acknowledge or even look at the other little girl she’d just spent the night with.  I saw how in the photos and from Joe’s summary of those sixteen hours spent away, Emma and M. didn’t interact despite Angelica and Joe’s attempts to facilitate.  They co-existed.  M. seemed a little sad, I may be projecting this onto her.  But I wondered what it was like for her to have a sleepover with a child who barely acknowledged her presence.  And then I felt awful that I’d had that thought.

Emma was happy,  genuinely happy to have had her sleepover, in fact, seemed exuberant to be away from us for a night.  When she left Sunday evening, without a look back, I could see that Emma was ready for this.  Emma was ready for her little adventure, time spent away from her family.  This is as it should be.  This is what all children experience.  That initial flickering desire to venture off, to have experiences that do not involve her parents.  A flicker, which over time, will grow into a more steady, stronger, determined flame.  This is a good thing.

So why am I having a problem?  Because I have expectations.  Because I have worries and fears.  In addition to all of this, I project my own hopes and feelings of what specifically a sleepover means, onto her.  Emma’s sleepover was not the sleepover I had in mind.  A sleepover of two little girls connecting with each other, whispering secrets in each other’s ears, laughing and playing and interacting, holding hands and friendship bracelets.  But what little girl was I projecting that idea onto?  Certainly not Emma.

Eighth grade – I was invited to a huge slumber party at my “friends” house.  Unbeknownst to me several of the girls, maybe all of them, got up in the middle of the night and threw my bra into the freezer, much to their amusement and my horror, embarrassment and shame.  Shame because I did not require a bra, shame because I was singled out and didn’t fully understand why, shame because it felt mean and made me sad, but everyone else was laughing.  Laughing in a way that made me feel all the more isolated and alone.  Shame because I wanted to be included, often was included, but never felt that I really fit in.  They laughed, so I tried to laugh too, which made them laugh all the harder.  I remember.  I remember feeling so relieved when my mother came to pick me up.  “How was your sleepover darling?”  my mother asked.

“Okay,” I answered.  How could I explain?  How could I tell her about something that I hadn’t entirely understood?  How could I put into words that which I found confusing and oddly shameful?

“Did you have a good time?” my mother asked again.

“It was fine,” I said, turning my head away from her to stare out the window at the blurred landscape as we drove back home.

I am grateful knowing Emma will be spared this kind of “sleepover.”  I am grateful when I take Emma to one of the many playgrounds in New York City with various water features, and she pulls off her dress revealing her favorite two-piece bathing suit, without any self-consciousness.  Her belly prominently displayed for all to see, she tears from one water drenched shape to the next with gleeful abandon.  Emma is without inhibitions.  She is without embarrassment, she is without shame.  Female neuro-typicals could learn a thing or two from Emma.  I could learn a thing or two from Emma.

It is in those moments, at the water park, as I sit watching her that I come face to face with my perceptions, my expectations, my ideas of what should and should not occur in our daily interactions with one another.  I catch glimpses of the fallacy, the dishonesty of the words we so carelessly toss about.

“How are you?”  “Great!”  “How was the sleepover?” “Fine.”  “Did you have fun?”  “It was nice.”  “Are you okay?” “Yup, everything’s good.”

Even when we aren’t.  Even when it wasn’t.  Even when we didn’t.

My latest piece My Fear Toolkit published in the Huffington Post

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Progress

Posted on December 14, 2011 by | 4 comments

A couple times a year we are called into Emma’s school to meet with her teachers to go over her progress.  There were a couple of things that stood out this morning during our conference.  The first was a video showing Emma playing with another child in her class.  She says his name and the two of them hug each other and laugh.  This goes on for quite some time, with Emma saying things like – “Hi Charlie!  Say hi.”  Then she waits and when Charlie, who is nonverbal, doesn’t respond, she prompts him by saying, “Say hi Emma.”  She takes his face and gently turns it so he’s looking at her.  Then he says, “Hi Emma!”  and they both start laughing .  It is one of the most uplifting videos I have ever seen.  In another video she negotiates with a different child something that she wants to do with the child and her therapist, but the other child at first does not want Emma to join them.  They go back and forth and eventually Emma says, “Please, please I want to go together.”  The other child relents and the video shows Emma, the other child and the therapist dancing down the stairs with Emma singing, “Together!  Together!”  It is adorable and shows tremendous progress.

For more on Emma’s journey through a childhood of autism, go to:   www.Emma’s Hope Book

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Connection

Posted on November 23, 2011 by | Leave a comment

Yesterday I was shown a video of Emma with one of her classmates, Charlie.  Each year Emma has had someone she particularly likes.  Someone she will talk about and want to sit next to.  Last year it was an adorable little boy named Justus, the year before it was Ben.  This year it is Charlie.  Charlie doesn’t have much language, but they connect on another level.  In the video Emma and Charlie are hugging each other and Emma is doing something with him that I have only seen her do with her older brother, Nic.  She is running her fingers through his hair while laughing.  The two of them are so adorable with Charlie beaming and Emma laughing, the two of them hugging each other and then Emma puts her hands on his shoulders, while maintaining eye contact she bends from side to side and bops her head up and down.  Charlie follows her lead and they laugh while doing a kind of dance together; watching it made me cry.  Something so simple.  Something seemingly so small.  Two children laughing together.  Two children connecting with each other.  For me it was akin to receiving the Nobel Peace Prize.

For more on Emma’s journey through a childhood of autism, go to:   www.Emma’s Hope Book.com

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