Tag Archives: society

Some Emma Quotes

Posted on September 15, 2014 by | 6 comments

Each day is a day of discovery with moments of elation and excitement…  at least this is my take away from the past few weeks.  Here are a few of Emma’s comments along the way that she gave me permission to post.

Discussing black holes  (Dr. C and Emma are kindred souls.)

Dr. C:  What has happened to the atomic structure within a black hole?

Emma:  Opportunity to riot.  Structure is chaotic.

Dr. C:  Basically this is correct.  The gravitational pull is so strong that the atomic structure has collapsed.  Thus nuclei and electrons are fused together with no space between them.

Emma: Just like society during a riot.

Dr. C:  These societal people have collapsed onto each other to further this analogy.

Emma:  Exactly.

After reading  Act 1 Scene 1 of Romeo and Juliet

Ariane:  So what do you think so far?

Emma:  Understand that it is a heady play and play on words that pities human rage and love equally.

Reading and discussing the Texas Revolution 

Emma:  Because of dissent a culture was born.

Regarding the Trail of Tears and how the Cherokee were the last tribe to make the grueling 800 plus mile trek to the “Indian Territories” I asked Emma to tell me something about this picture. 

Trail of Tears

Trail of Tears

Emma:  Exodus.  Forced displacement of people with little choice.  It tells something about man’s wish for power.  Oppression is an ongoing story.

And finally on the topic of being home and not in a classroom setting – Emma typed, “naturally living in world’s infinite candy store of learning is to be in constant awe.”

6 Comments

Posted in Autism, homeschooling, Parenting

Tagged , , , , , , , , , , , , , , , ,

Parenting an Autistic Child

Posted on July 16, 2014 by | 55 comments

One of the most difficult things about being a parent to an Autistic child is the realization that almost everyone we parents come into contact with, when getting the diagnosis, have ideas about autism and what that means for our child, regardless if their ideas are based in fact.  So many people have theories and opinions about what autism is or isn’t.  There are endless charts and check lists meant to be helpful, yet they are all skewed and written from the point of view of a non autistic person or someone who uses spoken language to communicate.

Once you begin the evaluation process you are asked hundreds of questions.  Questions such as, “How many words does your child know?”  We answer these questions to the best of our ability and from the perspective that “knowing” means “speaking”.  Zero, or maybe five, ten, oh perhaps twenty, we say with wavering confidence and this answer is then noted.  “Does your child show interest in others?”  “Does your child engage in imaginative play?” We are asked.  And again, we do our best to answer honestly from what we’ve witnessed or believe we know.

But if we use spoken language, we answer these questions from the perspective of one who speaks, not from the perspective of one who does not.   The idea that someone might be unable to speak, but knows a massive amount and can learn to write to communicate or someone might have a difficult time translating words, whether written or spoken to match their non word thinking, is never brought up. As parents, we do not hear this idea voiced and yet it is crucial to our understanding of our child.  How different we might feel and understand our child if we were told that this may be our child’s experience of the world.  We could be told about the body/mind disconnect and how that might manifest itself.  We could be given the words of non-speaking children, teenagers and adults to help us understand.  Why are parents not being informed of this?

Instead your child is observed, notes are made and a diagnosis is given.  We parents are left with a word, laden with opinions, ideas, but few facts.  People talk about the “science” behind various “treatments” and we are told that the only scientifically proven method is x.  We are told that we must hurry as the window to help our child is quickly closing.  We rush ahead, madly, blindly, we do as we are told.  There’s no time to wait, to find other opinions, we must hurry, hurry.  We feel the guilt and the horror of not doing enough.  We must engage our child in a specific way.  We must urge them to complete puzzles and force them to play with dolls or farm animals, we give them treats so that they’ll comply, we buy play kitchens and a variety of toys and when they finally show an interest in one, we watch to be sure they don’t show too much interest.  Too much interest is a red flag, we are told.

When things do not feel right to us, we begin to do more research, looking for answers and we begin to form our own opinions about what’s really going on.  But for many of us we just feel terror and confusion.  Well meaning people give us advice.  We are sent links and the names of specialists.  Suddenly, many of us are deeply immersed in that surreal world of “alternative” medicine.  Each person we see speaks with the authoritative voice of someone who knows, who understands, who is convinced this will make our child “better”.  Yet few question what that word means.  What is “better” and what does “better” look like for my child?

The sinking feeling that something is terribly “wrong” embeds itself into every fiber of your being. Almost everything you read about autism confirms that sinking feeling.  This is a terrible thing that has happened.  It makes sense that  to you and your family, the focus is on “righting” what is wrong with your child.  A child whose life would be so much easier were they neurologically like the majority of the world.  But they are not neurologically like the rest of the world.   This one fact is overlooked as we continue to pursue all that we are told and advised to do.

How do we conceive of something we do not understand?  How do we see something we’ve not heard of or ever believed possible?  How can we understand a neurology that is so different from our own?  Autism.  What does that mean?  What does it mean for my child?  How do we support our children so that they flourish?  How do we best raise an intensely sensitive being who does not necessarily use words to think?  These are the questions I would like to hear educators, doctors and all those who feel they are experts answer.

The things that are being said, all those recommended check lists and the questions asked by all those autism organizations and experts are encouraging us to teach our children that they are the problem.   We are raising a population of children who are internalizing the awful message given to them…  Our children, who will grow up to be Autistic adults, are getting this message from almost everyone they come into contact with from the moment they are given the diagnosis.  It is a message that is hurting our children and hurts all Autistic people.  Our children, whatever their neurology hear it,and those who have internalized it may go on to deliver it too.  It is up to us to change the message.

Ask a parent what they want most for their children and most will say, “Happiness.”  Yet so much of what we are told about autism and our Autistic children is ensuring the opposite outcome.

"I don't want to talk about it!" ~ One of Emma's favorite spoken comments

55 Comments

Posted in Autism, autism experts, Parenting

Tagged , , , , , , , , , , ,

Transformations

Posted on May 22, 2014 by | 24 comments

I began this blog in April, 2010 as a document of what I thought would surely be our finding a cure for my daughter’s autistic neurology.  At the time I did not question that this was a worthy goal and one I should be pursuing.  At the time, all I could see were the things challenging her, making her life more difficult with no upside.  She was, I thought, the victim of a neurology that caused her nothing but pain and suffering.  It was not until I was confronted with the joys, things that I had witnessed right from the beginning of her life, but, after receiving her diagnosis then ignored and dismissed, that I began to appreciate the more complex truth about autism and what that might mean to her.  I could not have imagined that four years later my daughter would be posting her profound insights about life, her neurology and the impact society has on her, not because we found a cure, but because we didn’t.

For those of you who have read this blog from the beginning, or poked around and read a post or two from those early days or those who’ve looked through the archives of the pieces published on Huffington Post, you will see a transformation.  It is not a transformation of my daughter’s neurology as was once my goal, but a transformation of our thinking, and as a result the impact our thinking has had, not just on her self-esteem, but on our ideas about ourselves, individually and as a family.  We had to examine and question our own neurology and the challenges we face as a result, before we were able to fully appreciate hers.

We do not take credit for who she is becoming.  We cannot.  My daughter is strong, stronger and wiser than I have any right to claim influence on.  While it has certainly helped that we no longer fight against her neurology, but instead encourage, support and provide her with the help she needs to flourish, it would be wrong to suggest who she is and is becoming is all due to us.  Had we not found people who believed completely in her, people who saw beneath the words she spoke, the way her body moved, had they not shown us and encouraged us to question our beliefs and set them aside, to look beyond what we thought we were seeing and what that meant, we would still be lost in the horror of what we once thought and were told “autism” meant.

This concept, that of helping an Autistic child flourish to be all they autistically can be, is counter to all that we non autistics are told and urged to believe.  So much of the focus is on making our Autistic children behave and appear less autistic-like.  Appearing non autistic is the emphasis and the fact that this comes at a price, is not often spoken of or even considered among the non autistic population.  Many people see Autistic people, witness their inability to say what they feel and think, and believe there is nothing more to see.  They come to conclusions, having witnessed the person’s movement, their facial expressions or lack of, and believe what they see and what they then conclude is the “truth”.  Assumptions can create all kinds of misunderstandings that hurt a population who do not follow the unspoken rules of a majority.

(Trigger for abuse contained in links)  Misunderstandings that then lead to abuse.  Beliefs, like this and this are expressed and taken by many as fact, regardless of how misinformed, regardless of how shoddy the reporting, which further harm people and children, like my daughter.  The cure I seek now is for our society.  A cure for intolerance, sameness at any cost, and for those who seek to silence those who cannot speak with spoken language, but who have a great deal to say through the words they write, is what I dream of.

One of the many down sides of non autistic neurology is how we struggle mightily to blend in, to fit in at all and any cost.   We strive to be better than, to keep up appearances, to cover our awful feelings of insecurity and discomfort with pretense and by controlling those around us.  Some become obsessed with money and power and yet once they have both, they use it to further separate themselves.  Where and what is the cure for that?

This is the journey I now find myself on.  There are others farther ahead, I am doing my best to follow.  There are many who learned all of this sooner than I did.  There are some who will read this and because they have been on this road longer, will see how far I still have to go, but this is a trek, the best sort of trek, filled with discovery and beauty.  Emma is leading the way now.  I really am just trying my best to keep up, while remaining open to all that I still do not know, but am eager to learn.

 

24 Comments

Posted in Autism, communication, Parenting

Tagged , , , , , , , , , , , , ,

“Talking is Hard”

Posted on February 26, 2014 by | 60 comments

*Emma gave me permission to post some of what she wrote yesterday during a meeting with a few of the people who are part of her team at her school.

Emma wrote, “Talking is hard because I like to say silly things that people take seriously and that is why I am misunderstood.”

In reply to a question about Emma’s thoughts on another class joining hers for a project they are working on together, Emma wrote, “Worrying that I will not be thought intelligent.  I am considered stupid by people who don’t know better.”

One of the staff commented that the more she writes with them, the more people will understand and know how smart she is.  Emma then wrote, “I know, but it’s hard work for me to write.”

This is something I think people may not fully appreciate – that communicating is tough and hard work for Emma.  It isn’t that she doesn’t want to participate in discussions or want to express herself and have conversations with people, it’s that what most of us take completely for granted is, for Emma, not easy and requires tremendous concentration and effort.

Someone else mentioned how Emma understands everything that people are saying and Emma wrote, “People think I can’t understand what they say, but my hearing is excellent.”

And a little later Emma wrote, “I know people don’t mean to be cruel, yet they are when they see someone like me.”

One of the team wanted to know if she was referring to specific people and how she deals with them.

Emma wrote, “They are everywhere.  I try to like them anyway.”

Before people comment on this post, protesting Emma’s words and insisting that people are basically loving and kind and that Emma must be unduly influenced by me, to write such things, I will tell you that from what I’ve witnessed when with Emma – people typically talk about her right in front of her, talk about her instead of to her, do NOT presume her competent, treat her as though she were at least eight years younger than she actually is, and though they may not mean, intend or feel they are being “cruel” this is the word Emma chose to write.  I cannot, even for a moment, really know what it is to be as intelligent as my daughter is and regularly treated as though I were not.  I will just add here that Emma is far more compassionate than I am.  So if anyone is being influenced, I hope it is me being influenced by her.

And for what it’s worth, this is what I think about all of this…  I think human beings tend to be neither saints nor evil, but that the vast majority of the human population has ingrained knee-jerk responses toward those who are different from them.  It is rare to find someone who does not hold some degree of prejudice, often without realizing it.  I believe most people, often unconsciously and without meaning to, respond to people who are different, whether that means their skin color, their accent, the way they dress or look or behave, with either fear, irritation, curiosity, jealousy, impatience or pity.  It is actually quite rare for a person to treat ALL humans they encounter with respect and as complete equals, without any trace of “othering”.  I believe segregation breeds “othering” and that an inclusive society of diverse people is the ideal, but that’s another series of posts.

Emma

Emma

60 Comments

Posted in Autism, communication, prejudice

Tagged , , , , , , , ,

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

24 Comments

Posted in Autism, RPM, Soma Mukhopadhyay

Tagged , , , , , , , , , , , , , ,

I Will Not Model Compliance For My Child

Posted on October 10, 2013 by | 47 comments

“Look! Motorcycle bubbles!”  This was a phrase Emma used to say often.  It was an all-encompassing phrase that was both a metaphor for rain and the Fourth of July and New Years Eve fireworks, as well as a descriptive phrase of what both are like sensorily for her. (Emma has verified this is true.)  “Motorcycle bubbles” meant rain and fireworks, but there was so much more to those two words than simply pointing out the window and saying, “Look!  It’s raining!”  or “Look at the fireworks!”

When I went back through this blog to find the post I’d written about motorcycle bubbles, I found these, “Sorry Bubbles” and Em & The 4-Wheeler  written more than two years ago, that I’d completely forgotten about.  “Motorcycle bubbles” and her related phrase, “Sorry bubbles” are nothing short of poetic.  Poetry is all about using words in unusual, unexpected ways, “Sorry bubbles”  Great art evokes an emotional response within us.  While, a few years ago, I was appreciative of the beauty of phrases such as “sorry bubbles”, I was even aware of the emotional tug I felt when I heard her say those words, that appreciation was tempered by worry and concern about what I believed the larger issues were for my child who said such fascinating, yet cryptic, words.

I no longer feel the strain of worry and concern, but rather delight in my daughter’s obvious brilliance and poetic gifts.   I am grateful to have gotten to this place of appreciation and joy.  So many autism specialists and so-called treatments did not and do not appreciate the beauty of those word combinations.  So many believed they were aberrant, meaningless words that must be righted through rote learning and repetition of more “appropriate” words.  Which was code for “use these conventional words, so that we can understand you more easily.   Make our lives easier.  Behave in ways that do not draw attention to you.  Be like everyone else.”  And all of this was done under the guise of “helping”.  Meanwhile “motorcycle bubbles” and the like would be bulldozed, covered with the dirt of more conventional language.

People argue that our children need to learn to “fit in” that it is our job to teach them these skills and to not do so is to be negligent or (at the very least) unrealistic about life and the world.  But for those like my daughter, asking her to spend so much of her energy and time to try to change the way she moves (were that even in the realm of possibilities), forcing her to give up her string (which marks her as different), trying to get her to substitute her string for a more “socially acceptable” object, teaching her to swallow her verbal utterances that to others seem nonsensical, forcing her, every time she said anything, to repeat a more conventional way of speaking, even if all of this were remotely possible, I ask WHY?

Why would we do this?  Why is all of that more important than giving her the freedom, support and encouragement to be her unique and beautiful self?  Why is quelling her natural tendencies so desirable?  Why is tamping down her poetic phrases, replacing them with more standard, “accepted” speech preferable?  Why is all of this considered desirable given the massive toll all of that takes on her?  Even if she could do any of these things, even if all of it were obtainable goals, how exhausting, how bone-numbingly frightening, how terrifyingly isolating it would be to grow up believing that everything about you was fundamentally wrong.

I’m not interested in grooming my child to be something she is not, demanding that she be someone, that even if it were possible for her to attempt, would make her feel awful about herself, just so society could feel better about its own mediocrity.  I’m not willing to do that.  The only thing I care about, the only thing I’m interested in, is changing society’s views and the only way that’s going to happen is by countering what is considered the “norm” and saying, NO!  I’m not going along with it.  NO!  I am not going to raise my child to be compliant or train her to say what you want to hear or try to force her to move in ways that society has deemed acceptable.  I will not model compliance for my child to imitate.  I do not condone censorship that would bury “motorcycle bubbles” and “sorry bubbles” forever.

(Chou Chou – This photo’s for you!)
Love copy

47 Comments

Posted in Autism, communication, Parenting

Tagged , , , , , , , , ,

Variations in Neurology and Other Ramblings

Posted on July 31, 2013 by | 7 comments

I say I’m an addict and you envision a bum passed out in a gutter on the lower East side.  I don’t look like that bum.  I don’t fit that image.  So you smile at me and say things like, “well, you can’t really be addicted to food, can you?” or “oh you’re not really an addict, why label yourself that way?” or “you just need to use a little more self-control,” or “why can’t you just stop?”

I call myself an addict, not because I am active, but because I cannot allow myself to forget that my brain is hard-wired that way.  Once active, I can’t “just stop.”  I call myself an addict because that is the best descriptor of how my brain works.  I accept this.  I know this about myself.  There’s no judgment, it is what it is.  I call myself an addict because I don’t have the wiggle room to say I’m not.  Whenever I delude myself into thinking maybe, just maybe I can do x, y or z just this once, I’ve opened the door to addiction and I can’t afford to do that.  Once I become active, I may be able to stop, but I may not and that’s not a risk I am willing to take.  For twenty-two years I lived as an active addict and by the time I finally found the support and help I needed, I was ready to end my life.  It is not a way of life I want to revisit.  (I’ve written about some of this, ‘here‘, ‘here‘ and ‘here‘.)  But people have a tough time with this concept.  People who aren’t addicts, find this difficult to grasp.  That’s okay.  They don’t need to understand it.  I just need to keep doing what I’m doing.

There are things I need to do that help me stay “clean”.  I need support from other addicts.  Those friendships and relationships are not only important, they are essential.  All of us have a similar vision for each other and ourselves.  We place our shared vision above individual personalities.  If a disagreement arises, we try to remind ourselves and each other that our common goal is far more important than whether we like or dislike someone.  We try hard to keep away from gossip, judgment and personal attacks as best we can.  We talk about progress not perfection.  We mentor each other and reach out to those who are struggling.

Within these principles there are a great many tools that help us.  For me, the single most important thing has been realizing that when I behave with integrity, and by that I mean, do not lie, cheat, take advantage of another, treat others as I would like to be treated, do my best to keep my energy directed at my behavior and actions, reach out to those who may be struggling, listen, learn, remain curious and tapped into the wonder of life and all that I do not know, then I will live a far better life than if I do not do these things.  This also is the only method I know of to stay free from my addictions.  It’s pretty simple, right?  Simple, but not easy to practice.  I often don’t get it right.  But I keep trying.

I bring all of this up because there are many of us who have neurologies that differ from the majority.  As I said, judging my own or anyone else’s as good or bad, better or worse is unhelpful.  It is what it is.  We can get caught up in semantics, we can argue about addiction or any other neurological variation from what is considered the “norm”.  But more importantly (to me anyway) is the vision.  Many do not agree with that either.  My vision includes a society of inclusion.  I am reminded over and over that compassion and love are actions.  Who I am and the way I behave have nothing to do with what others think of me.  There are people who need support to do things I can do without thinking.  Things I take completely for granted, like communicating.  There are people whose lives could be transformed from one of misery to one of purpose if their neurology was accommodated.

In yesterday’s interview, Tracy said, “The man I am today is because my autism is the gift I was given to be a leader to anyone who has ever felt less than human based on their appearance. Martin Luther King knew that hurt and he took it to the mountain of peace. My mind is more like a Mensa candidate than I can type. My life is a testimony to the lesson of humanity. Like Larry typed “More like you than not” is the guiding principle to inclusion.”

We are all more alike than we aren’t.

7 Comments

Posted in Addiction, Autism, neuromajority

Tagged , , , , ,

Disability and Society’s Role

Posted on June 28, 2013 by | 39 comments

I have to preface this post by saying I’m still grappling with all of this.  I recognize that while I can intellectually understand something, it takes me much longer to completely “get it” to the degree that I can own it and incorporate it into my thinking.   Perhaps this is a specific quirk to my neurology…  Here goes – Yesterday afternoon something came up that I didn’t understand.  It was surrounding the words “disability”, “impairment” and the role society plays.  It was stated that autism is a neurological difference that can create certain impairments.  Impairments that can lead to disability when not accommodated.  I didn’t understand the concept at all.  I couldn’t wrap my mind around society’s role in creating disability by not accommodating.  I need to backtrack here for a second. Stay with me…

My father was in a wheelchair the last decade of his life due to a horseback riding accident that occurred when he was 40 years old.  Most of us, who do not require a wheelchair, probably don’t think about what can happen to the human body as a result of not being able to stand and walk around.  There are things that often occur as a direct result of being in a wheelchair for the majority of one’s waking day.  Things like sores, atrophied muscles, metabolism changes due to inactivity, which can lead to constipation, a greater risk for infection, etc.

My father’s accident was my introduction to “disability” as the word my father used to describe himself.  I didn’t spend much time thinking about society’s role beyond the easy to spot prejudices people obviously had upon seeing him, how some people were worse than others, either in the way they spoke to him with barely concealed pity or the way they raised their voice or slowed their speech as though he were intellectually impaired as well.  I was acutely aware of the many places he could not go because they were not accessible to his wheelchair.  And I was aware of the physical pain he was often in. But I didn’t think society played a role in creating his disability, but rather it exacerbated it.

I’m going to interrupt this train of thought for a second while you watch the following short video (1:26) via Ollibean, the terrific site that “unites disability-centric news & editorial led content- connecting families, self-advocates, & professionals through social conversations.”

This article (by  Lisa Egan) is a great one, sent to me by the wonderful, incredibly, kind and extremely thoughtful, Nick Walker, who is interviewed ‘here‘ on Shrink Rap Radio.  After I watched the video and read all the links, I felt I was beginning to understand.

My father’s accident left him physically impaired, but with the necessary accommodations in place he could still get around and do many of the things he enjoyed.  His quality of life was greatly reduced because many of the things he once enjoyed, playing tennis, skiing, were no longer possible, but he could do other things, swimming, gardening, spending time outside.  (Still, I feel confusion and can tell, I’m not quite there yet.  I think I have an understanding, without completely understanding, if that makes any sense.  And I’m also getting hung up on semantics.  But I have to keep going with this.)  I understand my father was impaired, but was he disabled?  Obviously he was to the degree that society didn’t do a great job accommodating him, but what about his weakened body and the pain he was in that kept him from pursuing things he enjoyed and would have done had he not been in such physical pain, such as travel?

*Those of you who understand all of this, please feel free to jump in and correct me.  As I said, I am processing!

Autism.  When my daughter was diagnosed I didn’t think of her as disabled, in fact I remember resenting the notion that anyone might think of her as such.   I understood she was different, and, sadly, I also bought into the “disease” thinking, which I’ve written about on this blog.  As my thinking evolved I thought of her as neurologically different from the majority of people and as such would face more challenges in the world, than if she were not Autistic.  Still later, and more recently I thought that because she cannot reliably use either speech or independent typing to communicate yet, she had a disability, but that her disability had little to do with society and was very much a result of the many issues she faced, physically, emotionally and neurologically.

The idea that society could and should do more to accommodate her and those like her is something I have witnessed first hand and am fighting for.  Yet, this idea that society created her disability, either some or all of it, is a new concept.  So last night I spent many hours reading.  This post from Savannah on her blog, Cracked Mirror in Shalott is terrific with great links to four other bloggers whose work I have tremendous respect for:  That Crazy Crippled Chick – A Musing on the Word Disabled, Radical Neurodivergence Speaking – In this place, in this activity, I am not disabled, Yes, That Too – Ablism is to Blame and  Autistic Hoya – Constructing Disability.   And finally this piece from Sparrow Jones, Voices of Experience on her blog Unstrange Minds where she writes, “In contrast to impairment, Reindal writes about disability as the “barrier to being,” suggesting that the social constructs that view those with impairments as lesser beings, not worthy of inclusion or accommodation, creates an existential crisis that extends deeply into the disabled person’s core being.”

And this is why all of this matters so much.  Because we as a society are adding to impairment.  My child is Autistic.  There are things that are much harder for her to do than the majority of the population.  Her hardship is exponentially increased by society’s lack of accommodations for her and those like her.  This post about my experience at the AutCom Conference last fall is an example of simple accommodations  easily put into place.  My daughter’s life will be infinitely easier if people were better informed about autism and what that means.

Society plays a role in all aspects of her life, from the education system and how we perceive inclusion, to air travel, where she could be allowed to sit by the window to accommodate her need to look out the window to better manage her stress, just as someone in a wheelchair is given an aisle seat and not expected to sit just anywhere.  I could go on and on, but I’m interested to hear from all of you and hear your thoughts on all of this.

Emma and Henry type to each other with Pascal and Harvey’s assistance

H &E type

39 Comments

Posted in Autism, disability, Parenting

Tagged , , , , , , , , , , , , ,

Rethinking Unhappiness

Posted on May 3, 2013 by | 42 comments

I was alerted to an article written by Dr. Michael Oberschneider entitled, Ask Dr. Mike: Expecting and Anxious About Autism.  In the piece he writes, “Some of the happiest parents I know (both personally and professionally) have children on the Autistic Spectrum.”  In the comments section people weighed in with their thoughts.   Many parents wrote of their outrage (and a few of their disbelief) that Dr. Mike suggest “happy” parents of Autistic children even exist.  They seemed to equate happiness with a lack of concern.  A number of parents suggested that Dr. Mike was simply wrong and refused to believe that he could actually know such parents.  One person went so far as to suggest he was trying to trump up more clients, which is an interesting idea, but the logic of that argument eludes me.

Before I go any further, I have to say this – there was a time, not so very long ago – when I was one of those parents who was incredulous that anyone could be “happy” and have an Autistic child.  I no longer feel that way and the reason is, I stopped trying to cure my child of herself.  I feel sad that this was my experience.  I wish it hadn’t been.  I know it negatively affected my daughter.  I know it negatively affected my entire family.  I know now that the depression I felt was because I believed I could cure her.  I was angry, I was depressed, I believed that no one could truly understand.  I felt alone and isolated in my sadness and rage.  I was engaged in a war only to realize I was fighting myself.  I know this now, but I didn’t then.  I wish I could hit the rewind button and do it over differently, knowing what I know now.  But I can’t.  I have to move forward.  In moving forward I am aware that I owe it to my daughter to make a living amends to her for my past mistakes.  Mistakes that I cannot know and will never know how badly they impacted her. Part of my living amends to her, beyond trying my best to be the best mother to her (presume competence) that I am capable of is to counter the negativity and fear that continues to swirl around the very mention of autism.

Today I am one of those happy parents Dr. Mike mentions.  I have two beautiful children, one who happens to be not autistic and one who happens to be Autistic.  And yes, there are times when I worry about both their futures.  There are times when one of them does something or is going through something and I find myself concerned.  Concern is one of those feelings, like worry, that actually does not help my child.  These are things I feel and it is up to me to figure out what to do about them.  Are there actions I need to take that will help my child get through whatever it is that is troubling them or causing problems?  Are those problems something I can control or are they things that require patience, compassion, love and support?  What can I do to accommodate my child so that they might better cope with whatever is going on?

The single biggest issue I confront repeatedly with having a child who is Autistic, with unreliable verbal language, is the misinformation, the fear, the misperceptions and the ignorance of those who meet her and what they then assume because of what they see.  Fear coupled with ignorance = prejudice.  We fear that which we do not know or understand.  We make judgments, we believe ourselves to be superior, we then behave accordingly.  None of this helps anyone.

It makes me sad that I was once so unhappy and that I attributed my unhappiness to my child.  I know now this was not true.  It wasn’t my child who made me so unhappy, it was my perception of her and what I believed that meant that caused my unhappiness.  I assumed things about her that I now know are not true.  They are not fact.  What is true, what is a fact is this:  My Autistic child is far more capable than most people give her credit for.  My autistic child does not use language the way most people expect.  Through a great deal of hard work and over the course of many years my daughter is learning to communicate through typing.  She has proven repeatedly that she is not only aware of what goes on around her, but she is extremely intelligent and capable.  At the moment she requires support to communicate, though we believe she will not require that level of support in the future.

My happiness or unhappiness has nothing to do with either of my children or my husband or my marriage.  My ability to feel joy is an inside job.  It takes work to excavate all those old beliefs, to throw everything you think you know and believe and start over.  I encourage anyone who is suffering and believes their suffering is directly the result of their child’s neurology to examine their beliefs.  Throw it all out.  It isn’t serving you and your suffering isn’t helping you help your child.  Isn’t that ultimately what all of this is about?  Aren’t we all trying to be the very best person we can each be?  Isn’t that what we hope and want to model for our children?  Isn’t that the point?

April 2013 – With my beautiful friend Lauri, another “happy” parent 

A & L

42 Comments

Posted in Autism, Parenting, presume competence

Tagged , , , , , ,

Why Teach Age Appropriate Topics?

Posted on March 19, 2013 by | 44 comments

Someone asked me why would I teach my child age appropriate topics such as the American Indians, the arrival of Europeans to America, the Roman Empire and the difference between amphibians and reptiles, when tying her shoes, answering (whether verbally or by typing) a why question and riding a two-wheel bike has yet to be accomplished.

The short answer is – they are not mutually exclusive.  It is not that one thing gets taught and the other is left to languish.  I believe all these things are important for any child to learn; why shouldn’t my child have the opportunity to learn these things too?  But just to play devils advocate, let’s say that the questioner still asks, but why?  To them I say, because knowledge is freedom.   Knowledge gives us context, history provides us with choices, knowing how our government works gives us important information about leadership, honesty and conversely dishonesty.  Learning about geography gives us information about the physical world we inhabit.  Reading Wordsworth or Shakespeare or Susan Sontag, studying a painting by Rubens or Renoir or Basquiat, listening to music by Rachmaninov or  Ray Charles or, my daughter’s personal favorite, Gwen Stefani transports us, encourages us to think both analytically and creatively and enhances our lives.

Ralph Saverese, author of  Reasonable People: A Memoir of Autism and Adoption wrote a wonderful piece about a year ago, The Silver Trumpet of Freedom about his non-speaking, Autistic, son DJ who had just been accepted into Oberlin.  It’s a terrific piece and I encourage all of you to take a few minutes to read it.  I’ll wait.

Right here.

Seriously.

Go.

Read it.  

What many believe to be true about Autism is proving again and again to be incorrect.  What many believe to be true about those who are Autistic AND non-speaking is proving to be incorrect.  Our ideas about someone who has physical challenges AND is Autistic AND does not speak are proving to be incorrect.  Our incorrect beliefs are limiting how that segment of the population is taught and what information they are given access to.

This must change.

44 Comments

Posted in Autism, Education, Parenting

Tagged , , , , , , , , ,

Trouble Awaits if I Forget

Posted on January 29, 2013 by | 22 comments

I began this blog almost three years ago as a document of my daughter.  At that time I knew nothing about advocacy, I knew only one Autistic adult though I’d read the works of the most famous Autistic people ~ Donna Williams and Temple Grandin.  I assumed there were few Autistic adults because I believed what I was being told, that autism was an epidemic, and I feared it mightily.  I had a few people, made up of close friends and family members, who began to read what I wrote.  This blog was a place for me to write about how I felt and, while I tried to keep my feelings to a minimum and reported lots of dialogue and any progress I saw, I did write occasionally about how sad, angry, frustrated, scared and yes,  sorry for myself I was.  I never once considered how Emma might feel about what I was writing because Emma barely spoke, didn’t read (as far as I knew) and the idea of “presuming competence” was one I’d never heard spoken, let alone considered.  Regardless, I tried to stay upbeat.  I grew up in a WASPY enough environment to believe it was unbecoming to air one’s dirty laundry.  In addition, I believed and still do, in the power of positive thinking.  I wanted to feel hopeful, even though, it seemed to be in short supply.

As time went on and more people found this blog I continued to write about our life.  I understood that having an Autistic child made what I wrote more interesting than had I been writing about a neurotypcial child.  I never thought of it as an “opportunity” but I was certainly aware that I was being given a platform I might not have otherwise had.  I wrote a number of posts where I agonized about what it was to be the parent of such a child.  I saw nothing wrong with my thinking.  *Those posts have since been removed.  I do not post any photos or quotes without explicit permission.*  Had anyone said to me then – can you understand that your daughter’s neurology is not “good” or “bad”, that Autism in and of itself cannot and should not be judged as a deficit, with those whose neurology is in the majority held up as good and enviable, I might have been able to hear them.  But no one did say that.  No one said anything remotely like that to me.  Ever.  Not. Once.

Had someone patiently explained the concept of “presume competence” and exactly why it was so important would I have been able to hear them?  Had someone explained the relationship between depression, lack of self-esteem, how ALL children, whether they are verbal or not, whether they appear to understand or not, internalize what is said and thought of them, I probably would have understood.  I might have even felt the surge of hope I was so desperate for and that I felt so many years later when someone actually did take the time to patiently explain these concepts.  If someone went on to describe the problematic and ultimately destructive issues related to functioning labels I might have been able to comprehend, not right away, but I would certainly have found those concepts intriguing and would have wanted to know more.  Would these ideas have been enough to change the trajectory we found ourselves on?   I like to think the answer is yes.  I am just grateful, enough Autistic people took the time and energy to explain to me when they did.   These concepts are the basis for everything I do and think regarding Autism and my daughter.

Just a year ago, when I began to read the blogs of Autistics who were in their early 20’s, 30’s, 40’s and *gasp* 50’s my understanding changed radically and rapidly.  I started to see that if I wanted a personal place to vent I could do so in a support group or in a personal journal, but that what I wrote about on a public blog or submitted to the Huffington Post was reaching far more than just a few family members and close friends.  Things were easily misunderstood, my intentions were mistaken, the message I was sending was misconstrued.  Slowly, slowly over time I began to realize just how skewed public perception was and how that perception was affecting public policy, the media, where money was being spent.  I heard repeatedly how public perception played out in people’s lives.  I became aware of how pervasive the inequality and injustice was and remains and I became determined to speak out about it.  This was no longer just about my hopes and dreams for my children.  This was about human rights being blatantly ignored.

And yet, all of this is tricky.  There’s a huge danger of being seduced by one’s own ego.  When either of my children become boosters for my self worth and ego I know problems will arise.  When being a parent of an autistic child gives me a platform that I otherwise would not have available to me, I need to acknowledge that. Regardless of whether I asked for it, intended or even wanted that platform, I have to respect its presence.  When being the parent of an autistic child becomes my identity, I know I’ve drifted away from where I need to be.  My Autistic child is not “who” I am.  That’s putting way too much pressure on any child, and it sets up an unhealthy and untenable relationship.  Trouble certainly awaits me if I forget that.

A Peek at the Hudson River taken from the Highline

The Hudson River

22 Comments

Posted in Autism, Parenting

Tagged , , , , ,

“I might be you.”

Posted on January 7, 2013 by | 40 comments

I might be you. the terrific new book written by Barb Rentenbach and Lois Prislovsky, Ph.D awaited my arrival from our holiday travels.  I am only on page 51, but wow(!) what a book!  Barb is Autistic.  She also happens to be non-speaking and needs support doing almost everything including communicating.  Barb uses facilitated communication to type.  In her own words she explains, “The deal is, I still can’t talk, but I can type on a keyboard or letter board if someone supports my wobbly hand.  The process is called facilitated communication, or “assisted typing.” It is quite controversial, meaning lots of people think it is not really me doing the typing.  This infuriates me…”

For those who are dubious about facilitated communication, Barb now types independently requiring just a hand placed gently on her back.  In October of last year I went to a presentation given by Barb and Lois.  It was riveting, mind-blowing and made me rethink everything I thought I knew, but realized I did not.  Barb wears thick glasses and uses an oversized keyboard to type.  She has a terrific sense of humor, is incredible honest on all topics including extremely personal ones;  this book is a joy to read.  She discusses self-injurious behavior, feces smearing, violent outbursts, which her school viewed as baffling and without provocation and yet in the telling, one realizes this was not the case.

Barb eloquently describes the brutality of other human beings who do nothing to temper their contempt for any who appear different.  Barb writes, “Let me be brutally honest.  Most of the blisteringly painful assaults and provocations happened at school – this school, by children who grew up to be you.”  Breathe.  Read that again.   “… Most of the blisteringly painful assaults and provocations happened at school – this school, by children who grew up to be you.”  “You.” Take a breath and let that in.  “Children who grew up to be you.”  

Confession:  I am in second grade.  There is a little girl named Louise who wants to be my friend.  She has warts covering her hand, the hand that she has extended to me, the hand she wants me to hold, only I will not.  I am the new kid.  I am well aware of the unspoken rules of the playground.  You do not hold Louise’s hand.  You do not allow yourself to be seen with Louise.  You distance yourself.  You play alone if need be.  To be seen with Louise is to be like Louise.  Flawed, with warts for all to see.  Instead I tell everyone I moved from a foreign land and spoke another language, a language only I and the village I have moved from speak.  I lie about my family, I lie and say we lived in a field with a house made of straw.  I told these lies because I thought they made me seem exotic and fascinating.  I lied because, already at the age of seven I believed I was less than, not good enough, destined to be like Louise, with my hand outstretched to others, only to be rejected time and time again.

Barb writes about how she is unable to eat without making a mess, as hard as she tries, her hands do not do as her mind bids them.  At lunch a student reports her messy attempts to eat her sandwich and is told by a teacher that she will have to eat somewhere else, away from the others as she is, “making the other children sick.”  This book (and again I am only on page 51) made me stop and reflect on my own behavior.  Am I really as empathic, compassionate and wonderfully kind as I would have everyone believe?  Do I make assumptions?  Do I hold beliefs about others because of the way they appear?  What are my hidden prejudices?  Am I able to admit to them?   Who among us can say without hesitation that were our bodies not able to respond in the way our brain and intellect would have us, were we ridiculed and shunned as a result of that disconnect, that we would maintain our composure, would not act out in protest?

“Am I so different from any of you?” Barb asks.

Em sledding

Related articles

40 Comments

Posted in Autism, controversy, facilitated communication

Tagged , , , , , , ,

“Burden”? I Don’t Think So.

Posted on December 7, 2012 by | 20 comments

The roller coaster I call “autism” is less actual and more a description of my emotions, expectations and judgments surrounding specific things such as communication differences, internal issues, pain perception, sensory issues and the different ways in which Emma takes in information as opposed to the way my (more often than not) non-autistic brain works.  (My friend, AspieKid calls brains like mine NT-NOS, which I think is a hilarious and fitting acronym.) It is a “roller coaster” of my own design and construct.  A roller coaster being an accurate description of my emotional state, something I’ve grappled with my entire life and certainly well before I ever met my husband and had children.  Suggesting “autism” is the root cause for those pre-existing twists and turns my emotions tend to take or pinning the psychological upheavals I’m experiencing onto “autism” is not only wrong, it’s dishonest.

The truth is, I’ve always been a bit high-strung.  I live in New York City, a city whose inhabitants wear their neuroses proudly.  Neuroses in New York city are treated the way a runny nose is looked upon in the mid-west.  No big deal.  New Yorkers have melt downs at the drop of a hat.  I’ve seen fist fights break out between grown men in the middle of an intersection because of a perceived insult, people routinely scream at each other and cut each other off while driving.  Moms pushing babies and toddlers in Hummer-sized strollers wield them like tanks plowing a path for themselves along clogged sidewalks like Moses parting the Red Sea.  People think nothing of getting into loud arguments with lovers, neighbors, friends and strangers in the middle of the sidewalk, forcing pedestrians to walk around them.  It’s a city of ids and super egos.  It’s a city that is (perhaps) an exaggerated version of what one sees anywhere in the world.  People are capable of some pretty dreadful behavior.  Add a child with a different neurology to that already fragile, high-strung mix and you’re going to get some interesting results.  To then conclude that autism is to blame, defies all logic.  No one would do that.  Yet people blame their bad behavior, their inability to cope, their sadness, depression and general irritability on their autistic child all the time.

Suddenly it’s autism and Autistic people who are a “burden” to society.  Autism isn’t a “burden”.  It’s the negative views of autism, it’s the autism = untold horror, it’s the perception of autism and the lack of understanding and services, the lack of training and programs in our schools so they can help our Autistic children learn in a way that will ensure they flourish.  The “burden” is not our Autistic child on society.  The “burden” is the lack of support and adequate help families need so they can better support their child, giving them the sort of assistance  they need to thrive and flourish, a child who will one day become an Autistic adult and, in an ideal world, an active member of society.  We have to move away from this idea of Autism = burden.  Autism = tragedy.  Autism = _______ fill in the blank with a negative word.  We need to abandon our preconceived notions of what a non-speaking Autistic child cannot do.  We need to open our minds to the idea that our children are capable of far more than we may believe or can fathom.  We need to begin looking at what is good about Autism and the countless ways in which Autistic people can and do contribute to this world.  We need to remove the stigma and negativity and replace it with a more balanced and yes, positive view.

Imagine a world that includes Autistic people, accommodates Autistic people and stops shunning, restraining and abusing them.  A world in which it is not okay to have seclusion rooms and restraints, where a non-speaking person is treated with respect and without prejudice and where it is not assumed that because they do not speak they have nothing to say.  A world where people finally understand the burden isn’t the Autistic person, whether child or adult, it’s the lack of services, the judgments and the scare tactics being used.   Autism is big business and there is no better way to ensure dollars continue to pour in than when we are terrified. Let’s change that.

Having a child is joyful, exhausting, frustrating and the single most extraordinary experience a human being can have.  Having an Autistic child is joyful, exhausting, frustrating and the single most extraordinary experience a human being can have.   One can say that about a great many things in this life.  Let’s stop blaming Autism and our Autistic children for the ills of the world and the bad behavior displayed by people.

Emma and her infectious laugh

Em

Related articles

20 Comments

Posted in Autism, Autism "Awareness", New York City, Parenting

Tagged , , , , , , ,

Two Autistics Spoke. How Many Listened?

Posted on November 30, 2012 by | 68 comments

Yesterday C-Span covered “Lawmakers Look into Federal Response to Rising Rates of Autism.” For those of you interested in seeing all 3 hours and 48 minutes of it click ‘here‘. You can also read all eight transcripts of testimony by clicking on each link ‘here‘.

There were two Autistic people of the eight who spoke.  This, in and of itself was significant.  The last two speakers were Michael John Carley, executive dircetor of Global & Regional Asperger Syndrome Partnership (GRASP) and Ari Ne’eman, President of Autistic Self Advocacy Network.

Michael, at one point said, “…research is geared towards the future, and not where the greatest need lies, which is in the present. Today, the amount of services we collectively provide is like one page out of War and Peace when compared with what’s needed.”

He went on to talk about language, “Tone, and language may seem like pc-nonsense semantics to many, but not to someone on the spectrum who grows up having to hear words like “cure,” “disease,” “defeat,” and “combat” …”

“Such negative self-imagery makes self-esteem so much harder to achieve for an individual who is at a psychological disadvantage enough as it is. We have to remember that the vast majority of this population can read what is being written about them, and hear what is being said about them.”

Ari Ne’eman spoke last.  His was a riveting and powerful speech in which he spoke to the “epidemic” of Autism, “If we want to put the idea of an “epidemic” to the test, one of the most compelling lines of research we could pursue is an epidemiological study of the rate of autism among the adult population. A recent study of this nature conducted by the United Kingdom’s National Health Service found a comparable rate of autism in adults as in children in England.” 

Ari spoke of those who are non-speaking Autistics,  “If we invested a mere one-tenth of the amount of money that we currently pour into causation into empowering Autistic people to communicate, that young man and hundreds of thousands more like him would be able to communicate their needs to us today.” 

He went on to point out, “Autism Speaks and the Simons Foundation – devote even less to these areas, with Autism Speaks investing approximately 1% of its research budget to studies on the quality of services to Autistic people (and less than one quarter of a percent to Autistic adults) and the Simons Foundation making no investments in either area. It cannot be doubted that when it comes to the needs of Autistic people today both the public and private research agendas are quite simply not responsive to the priorities of the Autistic community, itself. ”

And he talked about the importance of Medicaid, the importance of providing assistance to those just entering the work force and those who would like to, but do not have the supports in place to do so.

Ari ended with – “I want to thank the Committee members for allowing my community – the Autistic community – the opportunity to have a voice in these discussions. The challenges society currently faces in integrating and supporting Autistic people and our families are not new. We have faced these challenges and made tremendous progress with other disability groups in the past. I believe that at the end the day this is a civil rights issue. I believe in the ability of the United States of America to guarantee the civil rights of all of its citizens. Autistic people want and deserve the same things that anyone else wants – inclusion in our communities, the opportunity to go to school and get a good job, the chance to make our voices heard about the things that matter to us. With your help, we can make that a reality.”

His final words were, “I look forward to hearing your questions.”

I was eager to hear the questions that would undoubtedly be asked of both him and Michael after such terrific speeches, particularly as they are both Autistic, the very people this entire hearing were meant to care about and want to help.   So I waited.  And then I waited some more.

Finally there were a few, but the majority of people who spoke continued to repeat those words that Ari and Michael had cited, as though they’d never been said.  It seems we care about Autism and our Autistic children specifically, but when it comes to “Autistic people” in general, we don’t care so much.

And so I’d like to know, Why is that?

How is it that we can say we “care” about Autism and those who are Autistic yet not fund programs that will make their lives better?  How is it we can use words usually reserved for war and ignore that these words make those who are on the spectrum feel badly about their very existence?  Is this how we want our children to feel?  Do we really want our own children to feel their existence is called into question?  Let’s just say, for the sake of argument, that our Autistic children, whether they speak or not, whether they are in a special education classroom or are mainstreamed, let’s just say, ALL of them can and do understand what is being said about them, but they cannot tell us or do not have the ability to communicate how that feels.   Can we at least imagine what that would be like if this were done to us?  Can we try, just for a moment to have the “empathy” needed to imagine?   Are we compassionate enough to pause, even if for a moment and consider the implications of what we are saying and doing?  Even if we cannot or do not want to think about all the Autistic adults whom we do not know, can we just think about our own child?  Our children will be adults one day, do we really want them to feel as so many Autistic adults do?  Our children have feelings.

Ari is Autistic.

Michael is Autistic.

Both spoke.

How many listened?

My Autistic daughter, Emma – 2002

Emma - 2002

Related articles

68 Comments

Posted in Autism, neurodiversity, Parenting

Tagged , , , , , , , , , ,

From Anthropological Duty To Love Or Things Not to Say to Your Sister-ln-Law by Kis Brink aka Gareeth

Posted on November 29, 2012 by | 14 comments

What follows is a guest post by Kis Brink (for those who follow this blog you will know her as Gareeth).  When she sent it to me, I was so taken with its insights, the power of her writing that I asked her if I could post it here.  Kis gave me her permission for which I am honored.  It was this piece by Kis that inspired yesterday’s post:  Yes, These Are Things I Think About, What About You?

“Love is a very controversial word in the history of autism. Hurtful ideas that autism was caused by the failure of parents to love their children and equally as hurtful ideas that autistic people were incapable of loving were put forward. Many still believe them. For me love was something I learned over time and it is still a word I use cautiously and sparingly. I do not say, “I love you” unless I am sure. The word is never used to express a strong preference for something. I think love is like many other aspects of Asperger’s and autism where our take on it may be slightly different but this in no way renders our love less real. It took time for me to learn this though.

Society has rules about love. Who you should and shouldn’t love. Who you should love the most and so on. I like rules. I wrote about my adherence to them and creation about them in a previous article. As a child when the word love was mainly a word devoid of emotional content I had no problem meeting the norms for when to use it. It was only as my range of emotion increased that this became a problem. 

Anyone who knows me well knows that unless you are prepared for honest answers don’t ask me a question. I know some people with Autistic Spectrum Disorders who have learned to use socially useful lies of the kind society expects. While seeing how they may be handy in many situations not only is this against my rules, I even have theory about why this is wrong.  I tell those unfortunate people trying to help me by explaining that sometimes you need to tell small harmless lies that I do not believe there are degrees of truth. I expect that some autism experts would be quick to label my thinking on this topic black and white thinking, but it is the way I think. I tell people trying to convince me it is useful to lie that I don’t believe in white lies. To me there is truth and non-truth. This is the reason why I must think very clearly and sometimes long on what may seem like a “no-brainer” to most people.

“An everyday example of something I give more thought than others is the simple, “How are you?” that comes up everyday. I have even concluded from experience that most people’s automatic answer of fine is seldom the truth. This whole ritual seems illogical to me. If you care about the person you then have to ask more questions to determine what the truth is and if you don’t, well to put it bluntly, why ask in the first place? I know it is a normative behavior in our society.  How this applies to love is it is also taken for granted that you will love your family and any offspring they produce. This, I think for most members of my family, would be reasonable. The part that gets me is, it is assumed that the onset of this love will be immediate. I don’t do immediate love. It seems illogical to me and perhaps even untruthful although it may be the truth for those who say they do. I have questioned some people on the subject but have yet to get a clear enough sample for a definitive conclusion.

“This brings me to the subtitle of this piece: Things Not To Say to Your Sister-ln-Law. I’ll say right off the bat that I am lucky to have an extremely understanding and kind one or looking back I suspect I provided ample opportunities for our relationship to grind to a complete and permanent halt. Almost ten years ago now my first nephew was born. He was in fact the first member of the next generation for our branch of the family tree. I was happy for my brother and sister-in-law and glad to be a Fasta (Danish for father’s sister). Society however expects more immediately. It seemed no one else had any reluctance to express love for this new scrap of humanity. I live some distance from my brother but planned a trip to see this child for the summer.

“When my nephew was four months old I made the trip to see him. On the coast I had been spared much questioning beyond his height and the usual things like that. I had none of his other kin to compare myself to. I had a new role as a human and I was going to figure out what it entailed.  The first night of my visit after my brother went to bed, my sister-in-law and I were in the kitchen together. She asked what I thought of my nephew. It was a question I was still working on internally. I had these vague feelings that I could not quite name. I didn’t feel it would be correct to call these new feelings love at that point so I commented that I felt a sense of responsibility and commitment to the first member of the descending generation. This was a concept I had learned in anthropology that, to me, seemed to best sum up what was happening inside of me.

“Well it was quickly apparent that this was not quite the answer she had been expecting. I don’t remember if she was near tears or merely frustrated or both when she told me, “You know it’s okay just to love him.” This didn’t really make sense to me. I suspected I would grow to love him. I had hopes about what our relationship would be like. I knew people love their nephews and nieces and that his other aunts and uncles were able to say they did without batting an eye. I went to my room feeling frustrated and confused. I had been looking forward to being a Fasta and it seemed I was already messing up at it.

“People have called me a kid magnet. Children seem to gravitate towards me and enjoy being with me. I enjoy them as well. Despite the fact that my nephew was only 4 months old I did feel a certain sense of pride as I observed how well he kicked his legs around at the gym-toy babies have for kicking. I felt more feelings which I couldn’t identify when I looked at him sleeping, I even took my friends in to admire the marvel of him asleep. Maybe if I didn’t have autism I would have concluded that all this did in fact constitute sufficient grounds to say I loved him.

“Pictures taken at that time with he and I show a softening in my face that is positively maternal. Journal entries reflect a marvel for even his simplest behavior. I spent a lot of time walking with him in the neighborhood, thinking about all the things I would teach him as he grew older. I felt equipped to handle my anthropological duties towards him. It was only when others spoke about him that a fear in me would surface that I was an inferior brand of aunt. That no matter what I had to teach him and how fierce my desire was to protect him until I could repeatedly say how much I loved him in a conversation I would not make the grade.

“Fortunately time passed. My own range of breadth of feeling was on a steep learning curve at this same time. With each subsequent visit I moved closer to knowing I loved him. I started to be able to do some of the things I had imagined. He learned to speak and could express marvel over issues that I did not really expect a child so young to notice or have thoughts about. One day at the zoo we passed the exhibit that explains poaching. I thought that he was way to young to really understand how bad it was and tried to explain it in a way that would make sense to him, but when his eyes filled with tears and he asked why repeatedly I knew he had a special soul. A soul that would require more diligent protecting and nurturing than I had thought.

“There were other signs in those days. He had an obsession for whales. One Christmas everyone seemed to know that they had better get him some form of whale or not even bother with a present..  All seemed well in his world until he opened up a whale that had the wrong color tongue. Most of us were surprised that he knew so much about so many kinds of whales but his action regarding this whale was decisive. Into the garbage it went. No amount of explaining that it was wrong to throw out a present or offering to correct this error would convince him that something horrible had not happened. He asked the perennial question of childhood although his whys were a little more detailed. Why would someone even make a model of a whale and not get the tongue color right. Well the kid had a point on that one.

“One day a few months after his maternal grandfather had died my sister-in-law phoned to report what he had said at pre-school. It was the final and convincing evidence I needed to conclude that his soul was so special that not only did I love him with all my heart, I was prepared to do battle against any who might attempt to hurt this soul.  His pre-school had a no-violent-toys rule that was enforced quite strictly. A boy had ignored this rule and had a toy sword with him. My nephew told him, “Sword all you can while you are young, because you can’t take your sword to heaven because when you go to heaven you are flat.”

“Well the first two parts of what he said amazed me. The part about being flat also made sense in the context of his life. His grandfather had been cremated and scattered in the mountains. This is where the flat notion came from. I couldn’t have been prouder of him if he had discovered a cure for cancer. I thought and felt all the things that I had worried about not feeling for the first few years of his life. I rushed to get the exact quote and pinned it to my bulletin board in my most sacred spot – right above my computer. I listed his age and his title: Philosopher and Theologian.

“I have always identified with the song by Don McLean, “Starry Starry Night.” The line where it says, “the world was never meant for one as beautiful as you” hits home to me. When the world hurts mostly because it fails to understand people like myself and people with other differences I think of this and there is some comfort in the idea that it might be a question of being an excessively beautiful soul for the world in which we live. I knew immediately that my nephew too was one of these people and any last question about whether the feelings that had strengthened overtime qualified as love vanished.

“Yes it was a journey to this point. Not a love that I could say I felt with confidence on his birth but this does not make it a conditional love. I love everything about him. Many of my happiest hours are spent in his company. His excitement when I come, hearing him brag about me to his friends, his joy in the simple things in life would make any aunt proud. I know longer worry that my brand of “Fasta-ing” (pardon the creation of a word) is inferior. It is clear from his response that it is not.

“This Christmas he bought gifts for other people for the first time. About mine he kept saying it was small but precious. I had no doubt that it would be. Like myself he too seems to need symbols to represent people who are absent and his feelings for them. I was delighted to receive a piece of pyrite from him on Christmas morning. He has one similar to it. I told him that I would keep it by my bed the way his was so we would both always be reminded of our love for each other as we fell asleep and woke up. I hardly need reminding at this point though. Still that once mysterious feeling of love fills me completely when I look at this precious stone and contemplate the beautiful relationship I enjoy with my nephew.

“For those of you who may have relatives with high functioning forms of autism, when they give you not quite the answer you expect, I hope you take into account our unique perspective on the world. Particularly in the realm of emotion we may be embarking on a whole new voyage. I feel so lucky to have a sister-in-law who could forgive my atypical response, who brings it up now and then with humor, but especially for having a nephew with a soul so beautiful he brought me into new waters.”

Emma reading her favorite book – The Way I Feel – 2008

14 Comments

Posted in Autism, Autistic Role Models, love

Tagged , , , , , ,