Wading into the world takes achingly long when comparing the expectation with the reality. Vibrant expectations swirl and dance a tempting flurry of ease and take no time to build the skills needed in real life. Disappointment embraces ecstatic expectation when stories walk along a more difficult path. Finding the wonder and natural tempo in working to achieve shimmers and eventually outlasts fleeting expectation.
Posted in Autism, autistic, body/mind disconnect
Tagged Autism, autistic, challenges, communication, comparing, difficulty, expectation, expectations, life, poetry, reality, skill building, typing to communicate
Emma has been interviewing various family members. So I wasn’t surprised when she wrote that she wanted to conduct another interview. Except this time she wrote that she wanted to interview me. This is part one of that interview…
Emma: What sparks your imagination more? Words? Pictures? Music?
It depends on the situation. I have been inspired and moved by all three at various times and can think of examples of each sparking my imagination. If I had to put them in order of most moving and inspiring, I would have to say visual, whether experiential as in scenic or static pictures, painted, photographs, sculpture, visual art. But even as I say this I’m thinking of music that has brought me to tears, and literature and poetry that completely captivated, even non fiction writing, particularly memoirs have completely enthralled me. Each has inspired and sparked my imagination. I don’t know that I can choose!
Emma: Who do you wish you could have known and why?
My grandfather, your Great-Grandfather. He is the one your granma, my mother speaks so highly of. It would have been nice to have had the experience of knowing him. He was also an extremely ambitious, smart and I’ve been told, fascinating man who lived a complicated and unusual life. I would have liked the opportunity to have interviewed him the way you are interviewing me.
Emma: What taught you more about life – notable happiness or terrible suffering?
In a strange way, both as they are both great teachers and I’ve experienced large doses of each. I only wish I was a faster learner so the suffering didn’t have to go on for as long as it did.
Emma: When were you decidedly happiest and when were you easily the most unhappy?
The most difficult time in my life was the years when I was bulimic. I felt as though I was watching life pass me by as I remained stuck in my obsessive-compulsive addictive behaviors. It was a terrible time of feeling I was betraying myself on a daily basis and couldn’t stop, though I wanted to more than anything. Sadly that period lasted for about 22 years. That’s an awfully long time to be so unhappy.
This period of my life is by far the happiest. I have learned and experience daily the power of gratitude, friendship, humility, family and the gift of giving back. I am so grateful for the many gifts I’ve been given – Daddy, N. and you, extended family and friendship. I have so much love in my life. I am extremely fortunate. Gratitude encourages misery to withdraw. People say it’s harder to talk about unhappiness, but I have found the opposite to be true. Misery came easily to me. Happiness I’ve had to fight for and once I caught slivers of it, I wasn’t willing to let it go.
Emma chose this photo of me to accompany her interview (I figure since I chose photos of Emma throughout her childhood, it is only fair that she now choose the photographs posted on this blog.)
Posted in Happiness, Interview, Parenting
Tagged addiction, Autism, autistic, bulimia, Eating disorder, gratitude, interviews, life, non-speaking, Obsessive-Compulsive, suffering, Typing, typing to communicate, unhappy, Walter Paepcke
Years ago I wrote about the difficulties involved in writing a balanced and yet honest depiction of life. I just reread that post and my first response was to delete it. But as I no longer do things on this blog without asking Emma, I asked her if she wanted me to remove it and others like it. She wrote, “no.” So I’m leaving it, though, for the record, if this were left entirely up to me, I would delete it, along with a great many others where I detail personal things about my daughter without thinking about how she might feel having such information made public. To be honest, I would delete the first two and a half years of this blog, just wipe the slate clean and begin with the spring of 2012 when I began to become aware of Autistic people who were writing about their lives. But this blog is not mine alone. This blog is a group blog, written by three people, one of whom has their name featured on it, Emma. (Emma has said she likes the name of the blog and does not want it changed.)
A blog is a curated version of life. We tell what we are comfortable discussing, what we are aware of and understand at the time of writing. But when writing about others, particularly family members, things get trickier. Even a year ago I wrote things I am not comfortable with, but as Emma wrote a few weeks ago, “it’s important to show that times were difficult. It is still not easy at all times.” Emma wrote this regarding another project, but when I asked her if her statement applied to this blog too, she wrote, “Yes.”
My dilemma in continuing to contribute to this blog concerns that difficult balancing act of writing about the things I am learning, processing and thinking about, while being respectful of other members of my family and not writing in a way that suggests I speak for them. Even so, I am not always successful. But more and more there’s a great deal I don’t write about. If Emma is going through something that causes her pain, I no longer feel comfortable writing about it, even from my perspective unless she asks me to. I argue that a certain amount of self censorship, particularly when done to protect the confidences and security of others, is not necessarily a bad thing.
The only time I’ve posted things that are personal and painful are when Emma has written, “Put this on the blog.” Or when I’ve asked her, “What do you want to talk about?” And her response was, “I want to write a blog post.” But these omissions, this version of life that I do feel comfortable enough to discuss here, cannot, by their very nature, give a true picture of our lives. So for some, it may seem our lives are ideal, or some readers may mistakenly think we never struggle, or perhaps these posts give the impression that we live a pain-free life of nothing but joy and ease.
Blogging is an intimate and immediate form of writing. Those of us who blog are far more available to those who read what we write than other people who write. Anyone can make comments and most bloggers, even those who do not or rarely respond to comments, read what commenters have to say. It is part of what makes blogging unique, and to me anyway, particularly compelling and interesting. Comments from others, whether they agree or not, are fascinating, often thought-provoking and some even make me reconsider what I believe or how I think about something.
Blogging is the reality TV version of writing. But even so, there is more left on the editing room floor than gets seen. It is the nature of the beast. Life is far too complex and messy, particularly when it is four lives or five, if one counts our mischievous kitty, to capture in 800 words or less, even when posting Monday through Friday.
Posted in Autism, Blogging, Parenting
Tagged Autism, autism blogs, autistic, Autistic child, balance, Bloggers, blogs, Communicating, honesty, joy, life, non-speaking, pain, Parenting, reality TV, suffering
A couple of years after my daughter was diagnosed with autism, a well-meaning acquaintance said to me, “God must think you very strong.” It was one of those comments you wish the person hadn’t said. I understood they meant well, I understood it was some sort of convoluted compliment, I understood they meant to be something like supportive, but it felt awful. Least of all because I have never gained any solace from the existence or non-existence of the G-word, but mostly because of its obvious prejudice to those who are Autistic. The person then followed that sentence with this next one, which was like a second jab to the solar plexus. “I could never handle an Autistic child.” I stood there in stunned silence.
At the time I think I probably looked away and tried to untangle the multitude of feelings that surged through me. But today, now years later, I have a couple of things I want to say. Let me tell you about my beautiful, perfectly wonderful, very human, child. She is like the sunlight that glimmers off the leaves of an Aspen tree. She is that first ripple that appears on a crystal clear lake, extending outward in ever-widening arcs. She is the sound of rain on fallen autumn leaves, she is the smell of sage brush after an electrical storm, she is the glimmer of morning sunlight when it first appears rising up over snow capped mountains, she is imperfectly perfect and a gift and yes, a blessing. And if I’m going to be completely, utterly selfish, I must say this: she has taught me more in her short eleven years of existence than any book, spiritual leader, graduate class, academic study or person I’ve ever read, listened to or met.
I know Emma’s life will have challenges because of her specific neurology. I know she will often have to fight harder, prove herself more often, work more doggedly and persistently than her non Autistic peers to accomplish things that many do not even consider accomplishments, but assume are a given. Yet there are some things she can do and will learn to do that will be easier for her than many of her non Autistic peers. I no longer see autism as a road block, but more as a different road all together.
Every morning I wake up filled with gratitude for my family. But it is my daughter, my beautiful, beautiful daughter who has introduced me to a world I never knew existed. A world that is beyond anything I could have imagined, a world filled with other Autistic people who enhance my life and the world on a daily basis because of their existence. Emma has taught me the true meaning of gratitude. She impacts my life in ways I will never be able to fully describe or express. Gifts are like that. Strength has nothing to do with receiving gifts. It does not require strength to see the good in others. It does not require anything actually.
That is another lesson my daughter has taught me – the beauty in being.
Em testing out her new pogo stick. Her record? 62 bounces.
A friend of mine hasn’t been feeling well. She had a cold or maybe it was the flu. When she wrote me I could tell by the uncharacteristic abundance of typos that she wasn’t feeling great. I thought about her, hoping she’d feel better soon. And then yesterday there she was, so much better, her old self, witty, funny, silly, and I felt tremendous relief. I hadn’t realized how concerned I was until she was better.
When I was nine my father went horse back riding. It was a Wednesday. He and my mother always went riding Wednesday afternoons. I was home, sick with the flu that afternoon. I remember staring out the window of my bedroom, the sunlight far too harsh forced me to turn my head from its glaring light. My father told me he’d look in on me when he returned. He never did. At least not for a long time. That afternoon he fell off his horse and, as luck would have it, he did not die as, those who administered to his broken body, predicted. He did not die, but he was never the same.
Sometimes our lives change so suddenly it is impossible for our minds to keep up. Sometimes it takes years to fully appreciate how one second can change so much.
When Emma was born, I could not have anticipated how completely my life would change as a result of her being. It took years for me to process, to catch up, to fully appreciate the magnitude of one child’s existence and all that would occur as a direct result. I could not have imagined how completely her life would change mine. And now, today, in this moment I can say with complete and utter conviction, her life has made mine infinitely better, infinitely more enriched, infinitely more meaningful. Her life. Her existence. Selfishly, and I do mean that literally, selfishly, I have benefited so completely from her being in this world, it takes my breath away.
In any given moment our lives can change. Just like that. And in that moment we have no way of knowing where we will be led. Awhile ago I made a choice. I didn’t think of it as a choice at the time, but I see now, that in fact it was. I chose to view the things that have happened in my life as moments of possibility. As long as I am allowed to live, each moment is a possibility to learn, to grow, to be open to new ideas. I can say that easily now. I understand this. As lives go, mine has been a privileged one. My perceived “hardship” is nothing compared to what so many have endured. I do not say any of this flippantly. This choice I made has been relatively easy to follow.
When my friend was sick I worried, when my father almost died I was devastated, when my child was diagnosed I despaired, but these things happened regardless of my response. My response to them didn’t change their occurrence.
In this moment it’s raining outside. Drops of water plop erratically on the air conditioning unit outside my studio, the clouds drift lazily along, skimming the tops of the multilevel buildings I see outside my window. The red brake lights from the cars careening along the interlaced roadways create a moving collage as they speed off and on the exit ramps of the 59th Street bridge. In this moment I am safe, my husband is safe, my family is safe, my friend is feeling better… In this moment, in this brief moment, all is well and I am filled with gratitude for all I have. I am filled with appreciation for the enormity of how one life has so profoundly changed my own in ways I could not have dared imagine. I am humbled, knowing I will never be able to fully repay the gifts she has given me.
Beautiful Emma
Everything takes practice. Learning to sit with my fears, takes practice. Learning to not say something that might be hurtful takes practice. Learning how to best help my child takes practice. Learning to disagree with my husband and not do harm takes practice. Learning to feel compassion for those who harm me takes practice.
Everything I have learned in life, I’ve had to learn over and over. I seldom get it the first time. I’m a slow learner. I know this. I can admit this without shame. It all takes practice.
Practice.
I am never going to do any of this perfectly. But I will always continue to practice.
Sleeping Muse – Constantin Brancusi 1910
Posted in forgiveness, Marriage, Parenting
Tagged buddhism, compassion, life, loving kindness, Marriage, Parenting
Upon returning home the other evening, we were told Emma had become dysregulated because her favorite imax movie about the Hubble Space Telescope wouldn’t play. This is the self-portrait she drew, unaided.
The note along with this self-portrait said:
“Emma is sad. They want to turn it on. Mommy, I need help turning on Hubble Imax theatre.”
This is the first “self-portrait” Emma has ever made for us.
Do you see the tears? The eyes? The downturned smile? And then there are the Obama-like ears, which made me smile, and the hands! God I love those hands that she drew, like rakes. I stood in the kitchen staring at this drawing, this drawing drawn by my amazing little girl who was feeling so, so sad and I felt tears well up. I felt that constriction in your throat that only comes when you are about to cry and I felt proud. So, so proud of her for drawing this despite her sadness. My heart ached for her sadness and at the same time I felt awe. Awe in Emma. Awe in this world and all of it’s inhabitants and how little we really know or understand. I felt humbled by the enormity of those feelings and by her. My little girl. My beautiful, expressive daughter. My Emma. This child that I have been so fortunate to have enter my life. This child who has taught me to see beyond what I believe is real, to strive to understand what I cannot, to push past my fears, to be present in a way that I never knew was possible. This child… this unique and stunning child.
It is yet another example of the incredible life I find myself inhabiting. It is a life and world filled with beauty and appreciation. It is an enviable life. An inspired life. A life I would not trade for anyone’s.
To read my most recent Huffington Post, click ‘here.’
To read my guest post on Special Needs.com, click ‘here‘
Emma's Hope Book 