Category Archives: love

Beauty

I see you spinning, spinning, spinning.  Your white t-shirt caught my eye.  Moving back and forth so many buildings away, through floor to ceiling windows, I might not have seen, I might not have noticed… but your white t-shirt, so very white, and then, and then I noticed your long limbs, moving in different directions from your body…

In my home, music is playing.  This morning it is John Lennon’s lullaby to his son, Sean.

“Beautiful,
Beautiful, beautiful,
Beautiful Boy…”

And I wonder has someone told you how beautiful you are?  Will you grow up knowing you are beautiful?  Are you being nurtured with those words?  Are you valued?  Is your spinning, spinning, spinning seen as an expression of your beauty?  Are you being reassured that no matter what, you are beautiful?

“Close your eyes,
Have no fear,
The monsters gone,
He’s on the run and your daddy’s here…”

Spinning, spinning, spinning… I glance up and you’re gone. Where have you gone?  The white t-shirt has receded.  The spinning has stopped.  But the lyrics continue…

“Before you cross the street,
Take my hand,
Life is just what happens to you,
While you’re busy making other plans…”

When you are grown, will you internalize what others have told you?  Will the lyrics of your life be one of beauty or something else?  Will you be able to see the beauty of all that is you?

“Beautiful,
Beautiful, beautiful,
Beautiful Boy…”

Spinning boy

Spinning boy

“Love Not Fear”

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

Fear.

This post had to begin with Emma’s words.

I’ve written enough to fill a book on fear and where that took us.  Stem cell treatments, spending all night on the internet searching for the next great “miracle” cure, taking my child from one specialist and doctor to the next, this is where fear took me.  I’ve deleted a great many posts where I express my tortured fear, but if you go to the first post, the post that began this blog almost four years ago, you will see in excruciatingly slow detail where fear took me.  Fear caused by those “alarming statistics” used ad nauseam by organizations like Autism Speaks, drives many like me to go to incredible lengths to “help” our child.  Blinded by abject fear we pursue things that can cause our children real harm, both physical and emotional.   The toll our fear can take on our children cannot be overstated.

I abhor Autism Speaks.  As the single largest organization claiming to know what autism is and is not, and worse, suggesting they “speak” for autism and those who are Autistic, Autism Speaks does more damage to my Autistic child than any other.  They have done a brilliant job marketing fear.  For transparency’s sake they should rename their organization ~ Fear Autism.  Donations pour in, large companies lulled into believing they are “helping” give their support.  Autism Speaks uses so much of their vast resources to hurt my child and Autistic people with that fear; what little good they accomplish in other areas in no way can counter the long-lasting and devastating damage they have done and continue to do to families who live in the kind of fear we once did.

I’ve written a great deal about fear on this blog, such as this post where I wrote about what I once believed:

What did the future hold for my daughter?  How was she going to get through life?  How would we be able to keep her safe?  How would she fend for herself?  Would she be able to fend for herself?  Who would take care of her once we were gone?  Fear.  Fear.  Fear and more fear.  And then, without even realizing it, I would find myself furious.  Enraged.  And my rage found the perfect target.  Autism.  Autism was what I was furious with.  Autism was what the problem was, so it stood to reason that if I could remove it, all would be well.  So this is what I set out to do.  Except that my daughter happened to be Autistic.  But if I didn’t say it that way I could continue to separate the two.  I could continue to tell myself I was fighting the autism and not her.  I could continue to believe that my anger with autism would not affect her.”

And this post where I wrote:

“When my daughter was diagnosed with autism, my fear of  institutions was the one fear, outstripped by any other, that brought me to my knees.  For years it was this vision, that horrifying gothic institution, dark and forbidding that I became convinced would be the inevitable conclusion of not my life, but hers once my husband and I died.  It was this looming image in my mind that made me hurl myself headlong into various remedies and treatments.  For years I felt sure that anything we could do to save her from such a bleak future was surely a worthy goal.  It just never occurred to me that what I thought was inevitable was not. And this is where I thank my Autistic friends for courageously sharing their stories with the world.  Because of them, their lives, their stories, I no longer believe this is my daughter’s inevitable future.”

Richard and I live a very different life than we did just three years ago and it is all because we stopped being afraid.  If you think, even for a second that we stopped finding ways to support our daughter, encourage her, cheer her on to be all she can be, then I encourage you to read the last six months of this blog. These last six months, specifically, show how Emma has increasingly taken over this blog, just as I once did not dare dream possible.  It is her voice that sings out, every day a bit louder, every day more powerfully, every day…

A few more posts on Fear:

The Impact of Fearing Autism
Where Fear Leads Us
How My Fears Drove Me to Pursue a Cure
Murder, Fear and Hope

Love Not Fear.  Tomorrow is the Love not Fear Flashblog.

For submissions email:  info@boycottautismspeaks.com

Love.  Just a whole lot of LOVE!  Emma's Halloween Costume ~ The Love Monster

Love. Just a whole lot of LOVE! Emma’s Halloween Costume ~ The Love Monster

Parenting = Love, Respect & Encouragement

One of Emma’s top five favorite IMAX movies is, Born to Be Wild about orphaned orangutans and elephants and the people who rescue and nurture them until they can go out on their own to live independently in the wild.  It’s a beautiful film and during the watching of it, Emma did a running narrative, which was both amazing and insightful because the things she noticed and talked about were not necessarily the things I noticed.  Her observations were all about identifying with the baby orphaned animals and not about the humans who have saved their lives.  This is as it should be, it seems to me.

She was identifying with the small animals, whose lives are dependent upon the human adults to care for them, respect them, nurture them while they are still so vulnerable and young.  I, however, identified with the adults who are feeding, caring for, giving bottles to, making comfortable sleeping areas for, while being careful to not “tame”, so they will one day be able to return to the wild.  I was so relieved to see the human caretakers encouraging the babies to build their innate skills by taking them to places where they could strengthen and build their climbing abilities and offering them materials to make nests or giving them the opportunity to interact with older orphans who would soon be venturing out on their own.

It was impossible for me, as a parent, to view this movie and not see the connections to parenting.  How we try hard to manage that balancing act of encouraging our children to do for themselves, only intervening when absolutely necessary, trying hard to not over identify, to honor and respect our children and not think of them as reflections of ourselves.  Watch for their innate talents and foster and encourage them, join them in their interests instead of trying to foist our interests upon them.  Respect them enough to allow them to make mistakes, encourage them to dare to dream big,  and give them the opportunity to flourish without criticism, but with love and guidance.  In the end, we all want that from each other.  We all want to feel loved and to love.  We all want to be seen and heard.  We all want to feel we are approved of.  We need that.  Children, adults, living beings, we all want to feel we matter.

Unknown

To My Father

I had a complicated relationship with my father.  One of my earliest memories of him was when I was no more than four years old.  I knocked on the door to his “in home” office and waited for permission to enter, just as I’d been taught.  Upon being told I could come in, I went over to his desk where he was seated and asked, “Why don’t you ever call me into your office?”  He smiled at me and replied, “Because you never do anything wrong… yet…”

It was the early 60’s.  Having children was not viewed with the same kind of thoughtful consideration it is given, by many, today.  Mothers were expected to stay home, while fathers were expected to go to work.  In-home offices were considered unusual.  Personal computers did not exist.  My father made notes and calculations on hundreds of pieces of paper.  It wasn’t until I was in my twenties before I could reliably decipher his illegible scrawl.  During my teens I fought with him daily.  I was more in touch with my animosity toward him than love.  During my twenties, his glaring deficits outweighed his assets.  It wasn’t until my mid-thirties that I was able to begin to forgive him.  My last memory of my father, aside from his actual death, was when I went to visit my parents after a grueling and unexpectedly, emotionally, draining trek in Nepal.

I can still remember the sound of the gravel under the wheels of the car as it drove down the slight incline of their driveway.  I can still picture my father seated in his wheelchair waiting for me, under the fig tree to the left of the front door.  I can still remember the feelings of emotion – relief, love, exhaustion and gratitude – that I felt upon seeing him there waiting.  I ran to him, crouched down so I was eye-level and threw my arms around his neck.  I remember the words I whispered into his ear as tears streamed down my face,  “I am so happy to see you.  I love you so much,” I said.  And then I kissed his wrinkled, tanned cheek and didn’t let go.  “I am so grateful you are here,” I said between sobs.

I remember the look on his face, the emotion expressed in those blue, blue eyes of his.  He smiled at me with so much adoration and love and said to my mother, with a slight grin, “I think we should send her off to Nepal every year.”  And then he placed his hand on my head and stroked my hair as I wept.

That is my favorite memory of my father.  Not six months later he was dead.  I am as grateful for that memory today, as I was seeing him that day, now so long ago.

Emma - 2008These are your grandchildren… (Taken in 2008)

Nic -0 2008

Dreams, Love, Loss and Gratitude

I had a dream last night that unsettled me.  I dreamt that I was standing with some other people and saw a woman with her young son.  He was small, maybe five years old at most.  I was fascinated because he was holding what looked to be a “string” like Emma has, but much smaller.  It was proportionately the same size as Em’s given how little he was.  I turned away because Em was saying something to me and when I turned back around the mother and her son had walked away.  On the ground was the little boy’s string.  So I picked it up and ran after them.  As I approached the mother I held out the tiny furl of string and said, “I think this is your son’s.  I wouldn’t want him to lose it.”  The mother stared at me and said, “What is that thing?”

I said, “Oh!  I think it’s maybe his string.  My daughter…”  but before I could finish she interrupted me and said, “That isn’t ours.  It’s garbage.”  I felt as though I had been punched in the stomach.  And then she turned away, carrying her son who gazed at me wordlessly over her shoulder.  I stood there watching them walk away from me and felt stunned and confused.  I wondered if maybe I’d somehow misunderstood and that perhaps it wasn’t important to her child.  And then I felt ashamed for having approached them and said anything.  Ashamed that I’d assumed it was important because my daughter’s string is so important to her.  Ashamed too, that what is considered beloved and of value to my daughter is seen as garbage by another.  I stood there feeling these things and then I turned to find my daughter was no where in sight.  I felt that horrible surge of panic and adrenaline as I began going through the various scenarios of where she could be or what might have happened to her.

When I woke up I wanted to cry I felt such unspeakable sadness.  All morning that dream stayed with me like a shadow.  All morning I have felt fragile and on edge.  And then I read my friend Gareeth’s latest blog post.  You can read it ‘here‘.  It is a daughter’s moving and powerful tribute to her mother.  I cried as I read because it is so beautifully written, but also because it is about profound loss as well as gratitude for what wasn’t lost.  Loss of time, loss of relationships, loss of missed opportunities…  and as I read I realized that dream was also about loss and judgement and denial and how we harm those we love.  And now as I sit here in my studio looking out at the bumper to bumper traffic on the 59th Street bridge, the rain pours down.  I can hear drops splattering the top of the air conditioner that juts out of one of my studio windows in irregular plops and pings.  Rain drops stream down the windows obscuring my view and I am surprised that I hear no angry honking given how treacherous the traffic is, just the occasional siren can be heard in the far distance.

I feel so grateful to all those people driving their cars who aren’t honking at each other.  I feel so grateful that though the traffic is at a crawl, people are being patient and it gives me hope.  Let me be patient today with every person I come into contact with.  Let me give myself the same respect and patience.  Let me be aware and kind and respectful to others today.  Let me feel gratitude for all that I have.  Let me feel my feelings and not behave as though my feelings are facts.  But most of all, let me know the difference.

Em’s string – February, 2013

Em's string

 

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