Poetry is ballet in words.
Graceful, agile words, yawning and leaping while whispering and shouting all at once.
The ending is the beginning
like water colors
I had no access to any of it
no way to share the beauty
alone
the dance
with no one to answer or interact
I was alone in the intense happiness
but now
I can choose to dance with others
when I want.
Posted in Autism, autistic, communication
Tagged alone, ballet, Communicating, dance, happiness, joy, non-speaking, poetry, speaking, together, Typing, unreliable speaker, Words, writing
Hearing music alleviates anxiety and welcomes dappled drops clasping gleeful feelings, radiating inward and outward simultaneously. Like bursts of intense flavor, music explodes in the body. Only a few stoic souls can ignore its command to move. Dancing is the healthy choice. Turn on your favorite music and give yourself permission to become a part of those notes.
Posted in Autism, autistic, Autistic Blogs
Tagged Anxiety, communication, dancing, happiness, movement, music
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
Posted in Autism, RPM, Soma Mukhopadhyay
Tagged Autism, autistic, communication, expectations, Eye contact, happiness, keeping still, Parenting, Rapid Prompting Method, RPM, social rules, society, Soma Mukhopadhyay, speaking, Temple Grandin
I haven’t written anything on this blog for an entire week, the longest I have gone without posting something since I began blogging over three years ago. A combination of things kept me from my routine, the first being – Emma and I were away, traveling to a new place with food we do not usually eat, people, most of whom we did not know, sleeping on beds we weren’t use to. Everything about our environment was different, but there was something else too. Something I can’t completely explain because I haven’t figured it all out yet. Something that was more than just a disruption to routine, something about identity and society and how the two intersect and influence each other, what that means and how that changes the way we live our lives. These are all thoughts that are more like wisps of random words than fully formed structures I am able to describe. I am in the midst of these words, loosely pieced together ideas; I am twirling among them, investigating, looking, feeling and trying to be still in my discomfort of not knowing or being able to define.
Em and I traveled to a place that was created, organized and for Autistic people. I took Emma because I wanted her to experience being in a place where her neurology was in the majority. I wanted her to meet others who are more like her than not. Em has not commented on our time away other than to say she had fun. I, however, have a great many thoughts and feelings about being in such a place. And I suppose the thing I felt more than anything else was how much more alike we humans are no matter our specific neurology. But there is always a danger in making such a statement. I have been accused of “sugar-coating” autism. I have been told my daughter must be “high functioning” because surely if she were like their child it would not be possible for me to have come to a place of not just acceptance, but celebration of all that makes her who she is. Some people have written that by accepting I am giving up. They equate acceptance with resignation and doing nothing. Others have said that acceptance will not get my daughter and others like her the services needed, that the negative rhetoric is necessary.
People have written me that they want to hear about the hardship, the difficult times, the pain… they wonder at my decision NOT to talk about that. To all those who come to this blog hoping to hear about the gory details of parenting an Autistic child – better to move along, you aren’t going to find that here. There are countless blogs that do that far better than I ever could, even if I wanted to. I lived too many years of my life neck-deep in pain and all that was wrong with this planet and my life. And by the way, I did that well before I had an Autistic child. I am more than capable of seeing the world as a dark and miserable place. I don’t need a great deal of encouragement to go there. Perhaps one of the greatest gifts I have been given is that I was once in such tremendous pain and know how easy it is to live in a place that feeds off that misery. I have no desire to return to that mindset.
I am interested in hope. I am interested in both being the recipient of and the giver of hope. Hope gives me energy. I feel invigorated by it. When my daughter types something I have never heard her communicate to me before I am filled with joy. When she says something I have never heard her say, I am filled with happiness. When she performs a new song, in Greek, no less, I feel proud, I feel excitement, I feel the beauty of her voice fill my soul, I feel bliss. When my daughter reads something and makes a comment about what she’s just read I am euphoric. When she tries something new, I am cheering her on. None of this erases the moments of pain. None of this means everything is simple or easy or that there are never moments of sadness or difficulty.
I will and do write about my own challenges, not because of my children, but because of who I am. Placing blame on others for my issues and challenges is not something that helps me change and it definitely does not make me feel any degree of happiness. My best moments with my daughter are spent when I have no expectations and greet each moment with wonder and curiosity.
“Type three colors,” I said this morning.
“…Violet, slate blue and red,” Emma typed.
I’m in awe.
Emma’s ever-changing “string”
Posted in Autism, Blogging, communication
Tagged Autism, autism spectrum, Facilitated communication, happiness, identity, negativity, Neurology, Parenting, support, thoughts and feelings
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
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
Posted in Autism, Parenting, presume competence
Tagged Autism, autistic, depression, happiness, Parent, Parenting, society
My father was born and raised in Paris. He was actually Swiss, hence my last name, but he grew up in France and only came to the States in his twenties. As a child I remember feeling ever so slightly embarrassed by my obvious “American-ness” something my father was often critical of in not so subtle ways. One of his complaints was regarding what he felt was an American preoccupation with “happiness”. One of his favorite phrases, repeated to my annoyance when I was a teenager, was “no one ever promised you a rose garden.” (It was an interesting statement coming from someone who lovingly tended to his rose bushes that accented an enormous cactus/rock garden in front of our ranch-style house.) I hated when he said that. I can remember driving in the car staring out the window, talking about the injustices of the world and our society and feeling it was all too much to bear and he would come out with the thing about the rose garden or another of his favorites, “it’s a wicked world” and I would silently scream in my head, while saying nothing.
It’s snowing right now. My studio windows look north onto a bridge where hundreds of commuters barrel along to and from Manhattan. On sunny days to my left the Manhattan skyline beckons in all its grandeur, to my right massive factory buildings rise up, grey concrete and windows where I can see heavy machinery, artist’s studios and manufacturing. Often, on the street my studio building occupies, film crews shoot TV shows I’ve never watched, parking is suspended, barricades are set up and large tables laden with food, none of the actors will eat, take up space on the sidewalk. But this morning it’s snowing. Manhattan is completely obscured by heavy, grey clouds. Different sized flakes whirl about as though unaware that gravity will eventually win out.
I spent most of my teens in a state of confused, directionless, rage. Eventually all that anger found its target… me. For the next few decades I took my upset and sense of injustice and dumped it on my self over and over until I had all but forgotten there was anything else to be outraged about. Slowly over time that changed. I learned to have some acceptance, I learned that my anger was not the single worst thing about me, to be buried and beaten down and hidden. I learned that other people’s anger, while uncomfortable, would not kill me. I learned about myself and I began to see that my resentments led me to behave in ways that would eventually crush me. My addictions (click for more on that) were all about rage, debilitating resentments turned inward. I learned the only way I could crawl out from under my addictions was through honesty, acceptance, compassion and love. I learned I could feel rage, but that I had to learn how to respect and care for it. I am still learning. I haven’t gotten it all figured out yet. I still falter and make missteps, but I know the key points so that I don’t completely fall off into self-destruction.
Anger. What is it telling me? I have to keep my actions honest. I have to keep conflicts centered on separating feelings from facts. I have to try to recognize when I am responding with judgment, prejudice, privilege, superiority or defensiveness (this is no small feat!) I have to step away and ask myself – am I being honest? Am I being willfully hurtful? Am I intentionally or unintentionally being manipulative? Am I afraid? If so, what of? Am I speaking from truth or because I want others to think well of me? Am I placing principles above personalities? Am I practicing these principles in all my affairs? Am I gossiping? Am I feeling superior or conversely inferior? Am I demonstrating any of these things in my behavior? What can I do to support those I care about and love? What can I do to be of service? What is the next “right” action in the face of conflict? Sometimes the answer to this last question is to be present and enjoy the snow falling outside my window and to see the beauty in its gathering on the rooftops and farther below on the ground. Sometimes, not always, but sometimes, taking care of myself so that I can take action at a later point means doing absolutely nothing in this moment.
January 2013 – The Chrysler Building at night
Posted in Addiction, Group Dynamics, Parenting
Tagged addiction, Anger, happiness, Manhattan, prejudice, resentment
Happiness is….
My husband
Our son
Em
Our fabulous kitty
This…
and this…
the ranch…
7:00 AM in New York City
And this… this one’s for you, Brenda
and this… Angie, love and kisses… (Em took this and it’s pretty blurry, but you get the idea!)
What makes you happy?
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Posted in Autism, family, Happiness, Marriage, New York City
Tagged Autism, Beauty, children, family, Friendship, happiness, love, Marriage, New York City, pets
We have a bedtime routine, which Emma because she loves routines, helps us implement.
“Okay Em, time to brush teeth!” One of us will tell her.
“Mommy come,” Emma often replies.
“I’m right behind you, Em,” I tell her.
Once in the bathroom she’ll walk us through the steps of teeth brushing. “First, floss,” she will remind me, grabbing the floss from me. “Now brush,” she’ll say making little brushing noises in a sing-songy voice.
“Wait, you have to go slower Em. You have to get all your teeth,” I’ll remind her.
“Now fluoride!” Emma will say, swishing the fluoride around in her mouth dramatically, before spitting it out into the sink.
“Okay, now pee,” I will say.
“Already did pee,” Emma said, last night when I reminded her to.
“Oh. Okay. Let’s get into bed then.” Most evenings I read to Emma before going to bed. We’ve gone through dozens of short non-fiction books ranging in topics as diverse as the first moon landing to the discovery of King Tut’s tomb. We’ve read about wild life in Northern America, we’ve studied carnivorous plants, we’ve learned about General Washington’s love of dogs, we’ve studied the works of daVinci, Degas, Renoir and O’Keefe.
Then one evening Emma said, “Alice?”
“You mean Alice in Wonderland?” I asked.
“Yes,” Emma said burrowing down beneath the covers.
“Really?”
“Yes,” she replied.
“Well, okay.” I found Alice in Wonderland on my ipad, downloaded it and within minutes was reading to her about Alice falling down the rabbit hole. When we finished Alice we moved on to The Wizard of Oz. When Dorothy and her haphazard group arrive in the Emerald City, Emma seemed less interested. “Do you want me to keep reading?” I asked.
“Yes,” Emma said. She always answers yes to that question. But in less than a minute she was asleep.
Then the other night, Richard put her to bed and I heard music playing so I poked my head into her bedroom. “What are you guys listening to?”
“Lullabies, Alycea,” Emma told me.
The oh so talented Alycea Ench made Emma a CD of lullabies for Emma’s last birthday. Alycea sings like an angel, her voice is about as beautiful as any I’ve ever heard and she also happens to play the guitar beautifully. There are only a few vocalists I am moved to tears by when listening to them sing and Alycea is one of them.
So for the past week and a half Emma has chosen to listen to Alycea sing before going to sleep.
As Em and I lay in bed together last night, listening to Alycea I thought about how happy Emma is when left to her own devices. Her median state is one of tranquility. When she was a baby we use to describe her as being in her own hippy dippy acid trippy little world. She was just so happy all the time. (That this should have been our first tip that something was “off” is an interesting comment on what we believe is “good”.) As I lay next to Emma contemplating all of this, Alycea began to sing the John Lennon song, Beautiful Boy, written for his son, Sean. Except Alycea changed the words to “Beautiful Girl.” In Alycea’s version the song ends with – “Beautiful girl, Darling, Darling, Darling Emma.” (I can’t even write this without feeling a little weepy.)
But every night, Emma jumps out of bed when she hears the first “Darling” and turns the music off.
“Wait Em. Let’s wait and hear the last part,” I protested.
“No. Music all done,” Emma said firmly, while removing the CD.
So I began to sing the last words – “Darling Emma.”
But Emma clamped her hand over my mouth and said sternly, “Mommy no! Be quiet!”
Now one could interpret this to mean that my voice in no way able to reproduce the ethereal beauty of Alycea’s and that in comparison Emma simply cannot tolerate it or one can try to muddle one’s way through the puzzle of why those last few words Emma cannot listen to. It reminds me of my favorite book written on autism, by Clara Claiborne Park called Exiting Nirvana My Daughter’s Life With Autism. Her daughter explains to her, when she’s much older and more verbal that certain things were intolerable to her because they were “too good.” I wondered for a moment whether these last few words in Emma’s lullaby are “too good” and so Emma can’t hear them.
Until Emma can tell me, this question will be filed under – questions to ask Emma – along with all the others.
For more on Emma’s journey through a childhood of autism and to hear her sing Que Sera, Sera with Alycea, go to: www.EmmasHopeBook.com
Emma wearing another “pretty dress”.
Posted in Autism, music, Parenting
Tagged Autism, autism and happiness, autism and music, autism children, autistic, autistic children, happiness, music, Parenting, singing
Emma's Hope Book 