Tag Archives: rules

Transformations

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.

 

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

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

A Story About The Lady at the Zoo

Emma was confounded yesterday when she was told by one of the Central Park Zoo employees that she could not sit on the railing to watch the sea lions being fed.  She was very upset and wanted to go home.  However, instead of biting herself or doing herself injury, she came up with the following story, which is yet another example of her delightful temperament, personality and a wonderful display of the progress she is making in being able to turn something upsetting into a story that was both poignant and very funny.

Before we got on the subway, Emma verbally preseverated in her attempt to work through what had happened.  “Mommy says no.  Mommy go home, Emma stay at the zoo with just Daddy.”   Emma reasoned immediately after leaving the zoo.

“But Em.  This isn’t about Mommy or Daddy, this is about the zoo employees.  This is their rule now.  They won’t let anyone sit on the railing any more.  It’s a new rule,” We told her.

“I want to sit on the railing!”  Emma wailed over and over again as we made our way to the subway.  “You have to ask Daddy!  Daddy! I want to sit on the railing please!”

“Emmy, this isn’t up to me.  This is a rule that the zoo has.  You can’t sit on the railing.”

“But I want to sit on the railing!”  Emma cried.  Then Emma flung both arms around me and buried her head into my side.  “I know, I know.  You’re so upset,” Emma said, mimicking words I often say to her.

“Oh, Em.  I know you’re sad.  I know how hard this is for you.  But I’m also really proud of you for the way you’re handling this and talking about it.”

When her beloved R train arrived Emma secured seats for us by the window and then told the following story.

“The lady said, You have to get off the railing!  You have to get down!  Yeah,” Emma nodded her head and frowned.  Then she said,  while stomping her foot on the floor of the subway, “The lady stomped her food and said, You.  Stomp.  Have.  Stomp.  To.  Stomp. Get.  Stomp.  Down!  Stomp.  You get down right now!  Then the lady said, I’m going to get you!  I’m going to tickle you!”  Emma demonstrated being tickled.  She stomped her foot and continued.  “Yeah.  The lady is going to tickle you.  Then the lady had to go home.  She hurt her back.  Bye!  Bye, bye lady.  Lady gotta go home!  Bye!”  Emma waved her hand, like a Queen waving to her adoring subjects.  “The lady had to go.”  Emma nodded her head and feigned looking sad.  “The lady went home and Emma got up on the railing to watch the seal show!  She had to go home because she hurt her back and she has to put on a bandaid.  Now it’ll feel better.”  Emma finished and looking triumphant said, “Emma got to sit on the railing!”

“Wow, Em.  I love that story!”  I said.  “How did the lady hurt her back?”

“She tickled you!”  Emma said and then collapsed into giggles.

Earlier in the day, playing on the High Line

To read my latest piece, Emma’s New Shoes, in the Huffington Post, click ‘here

And if you haven’t already done so, do vote for Emma’s Hope Book by clicking this ‘link‘ and clicking on the “like” button opposite Emma’s Hope Book.

What Wasn’t Said and Other Omissions

I just received a call from Richard who told me after I left to take Nic down to his school bus, Emma went into her room and began crying.  When Richard asked her what was wrong, she said, “I miss Mommy.   See Mommy tomorrow.”

For the past two nights I have been out, not coming home until well after Emma has already gone to sleep.  It is unusual for me to go out two nights in a row and clearly it made Emma sad.  While Nic is now at the age when he looks forward to our evenings out, so much so that he offered Richard $100.00 of his own hard earned allowance (generous and thoughtful boy that he is), “so you and Mommy can go out on a date,” Emma does not share his enthusiasm.

This morning Emma appeared in our bedroom at 5:28AM.  “Emmy, it’s too early.  You have to go back to your bed.”

Emma pointed out the window and protested, “But it’s light out!”

She was technically correct.  The first morning light was just beginning to show itself and though it wasn’t full daylight, you couldn’t argue that it was exactly dark, either.

“Em, look at the clock.  It has to say 6:30 before you come in and wake us.”  But I knew, even as I said this, that I was changing the “rules” on her.  Emma knows she isn’t to come into our bedroom until “it’s light out.”  As the seasons change, this is a dubious “rule” and one far too vulnerable to interpretation to really be meaningful.  Still Emma was doing her best to honor it.

Emma morosely trudged out of our bedroom and I, now wide awake opened up my ipad and began checking my email.  Five minutes later Emma appeared again.  “It says five and three and three.”

“Yes, but it has to say six, three, zero.”

“Okay. Okay.”  Emma said and looking forlorn she made her way out of the room.

I could hear her in the living room reciting various arbitrary “rules.”  “Lauren’s class.  No you can’t sit on the ledge, that’s dangerous.  You have to get down or you’ll bump your head.  No not going to hang on the pipe.  You might fall down and hurt your head.  Ouch!  That hurts, you have to go see nurse.  Be careful.  But listen, if you go on the ledge, you might fall down…”  this went on for quite some time and then there she was again.  “It says six, zer0, seven,” she informed me, while peering at the clock.

“Okay Em.  You can stay, but you have to be quiet.”  I scooted over so that she could crawl under the covers next to me.  She lay her head on my shoulder and picked up from where she’d left off.  “Have cereal and toast?  Then play the Wii?  School bus, Lauren’s class, study room with Joe, sleep, wake up…”

As I listened to her, it never occurred to me to note what she wasn’t saying.  In her list of what she expected would take place in the next 24 hours, I was not one of the things she included.  It never occurred to me that that omission was intentional and because she didn’t expect to see me again when she returned home, just as she hadn’t for the past two evenings.

This afternoon, I will be waiting for her when she returns home.

To read Emma’s profile in The Thinking Person’s Guide to Autism, click ‘here.’
To read my most recent Huffington Post, click ‘here.’