Tag Archives: children

A Father’s Powerful & Extremely Personal Thoughts on Parenting

*This was what my wonderful husband, Richard, wrote as a comment on my post the other day.  I asked him if I could make it a post all on its own.  He gave me permission…

“Pain is inevitable, suffering is optional.”

There are plenty of difficulties in life. Parenting is hard, but “childering” is harder. Parents usually have some experience in navigating the complex social expectations of the world. Children must gain that experience with each passing day, hopefully with the guidance, support and unconditional love of parents who put their children’s needs ahead of their own.

But there are a lot of parents who aren’t like that. Mine for example. I was taught from birth that my obedience and subservience were more important than my own needs and desires, or personal considerations. When I didn’t do what I was told to do, or didn’t do it fast enough with a “good attitude” I was yelled at. Punished. Spanked. Slapped in the face. Called awful names. Verbally abused. Degraded. Humiliated. And that happened nearly every day of my life until I left home at the age of eighteen.

My parents constantly reminded me how difficult I was to cope with. How hard I made life for them. If I would only try harder, work harder, move faster, then their lives would be so much better. Their lives.

Me? I didn’t really matter.

I waited a long time before becoming a parent. For years I swore I would never have children, perhaps because I was afraid I might behave like my own parents. And no child deserved that. When I met Ariane, something shifted monumentally in me, and I was suddenly eager to be a dad. I was 40 years old. Maybe I was finally emotionally mature enough to handle the enormous responsibility of parenting. I was ready to put someone else’s needs ahead of my own. Because for me, that’s what parenting is about. Service. My children don’t exist to fulfill my expectations, or make me happy. They exist in order to experience life and fulfill their destinies.

It is indeed hard to be a parent. I empathize and sympathize with all the parents who feel overwhelmed, who don’t have the resources or support to cope well with these tremendous responsibilities. I know life is hard for you. But trust me, no matter how hard you think you have it, your children have it harder. They sense your frustration, your discontent, your fear and panic, your anger and rage, your sadness and depression and hopelessness.

And quite likely, they feel themselves to be responsible. Maybe they are even told they are responsible. They feel guilt and shame. They try harder to make you happy. To not be so upset with them. Because they have learned–deep, deep inside–that they are “the problem.”

I’m talking about all children here, not just autistic children. For autistic children, multiply that angst level by a thousand. If you are autistic, you live in a world where so many people are telling you that you are broken, that you need to be fixed, that you need to be trained, conditioned to “act normal.” If you like to spin around over and over, or bounce, or rock back and forth, you are given the message, sometimes spoken, sometimes not, that this is “wrong.” And therefore, by extension, there is “something wrong with you.”

If you are non-speaking, or have difficulty with speaking, or with other physical issues, life is even harder, because you are being told that there is something REALLY “wrong” with you. Meanwhile, you’re trying to live in a world of “talkers” that constantly underestimate your intelligence and capabilities, who treat you like babies, who give you dirty looks, or tease you, or bully you.

You are put to “work” when you’re only two or three years old, or as soon as it has been decided that something is “wrong” with you. Early Intervention is required, in order that you be “fixed” and/or “rescued.” This is not optional for you. It is mandatory. You have no choice in the matter. And if you can’t speak, you can’t even complain. So it begins. The endless conditioning. The continuous demand to stop being who you are and “fit in.”

And nearly the entire world of medicine and science and education is conspiring to maintain the status quo of the deficit model. Autism isn’t defined by all its wondrous capabilities, but by what is seen as lacking. Autism Speaks continuously fuels the bonfire of “wrongness” with every dollar they spend.

And it has to stop. It is wrong. It is life-killing and soul-killing. And if you, as a parent, can’t see that this is the reality your children are living with every second of every day, you need to open your eyes and ears and heart.

I so wish it hadn’t taken me so long to wake up. I so wish that I could erase all the damage I did to Emma, like subjecting her to the torture of ABA when she was only two years old. But I can’t change the past. I can’t take it back. What I can do, is speak the truth of what I’ve learned to whomever is willing to listen.

My Beautiful Husband and Daughter

Richard and Emma – 2011

What I Want For My Children

As a parent I want to protect my children.  I want to shield them from hatred and cruelty and the kind of rage that leads people to abandon their principles in favor of power.  I want them to make mistakes, dust themselves off, learn from them and not be crushed by them.  I want to protect them from self-hatred.  I want to protect them from pain.  I don’t want them to suffer.

I want them to flourish.  I want them to know happiness, and the beauty of falling in love.  I want them to know the immeasurable joy friendship brings.  I want them to feel that indescribably delicious sensation of doing something for another human being, not because it’s expected, or because they’ve been asked to, or because they will be thanked or appreciated, or because they expect anything in return, but because it’s “right” to do so.  I want them to understand, truly understand what it feels like to believe in themselves, to feel good about who they are and what they can accomplish in this life.  And I want them to realize the connection between giving and generosity and having self-respect.

I want them to have options in life.  I want them to have the space, energy and luxury to find the things that captivate them, and I want them to be able to follow those interests.  I want them to know that when they are fearful, they will not be consumed by it.  I want them to be secure enough to stand up for themselves, to push back, to say no when they see others doing things they disagree with.  I want them to have that option.  I want them to feel the joy of being consumed by an interest.  I want them to know what it is like to be in this world and to feel safe, that wherever they are, they are not alone.

I want them to know they are loved and cherished.  I want them to know they are unique and yet the same as everyone else.  They are not superior, nor are the inferior, they are one of many, yet each has something special to contribute to mankind and this world. As a child, we used to go camping and my father would instruct us to pick up any trash we found.  We would strenuously object.  “Why do we have to pick up other people’s trash?  I didn’t leave this garbage here!”  And he would always say the same thing, “We leave a place better than we found it.”

This is what I want for my children.

“The greater danger for most of us lies not in setting our aim too high and falling short; but in setting our aim too low, and achieving our mark.”

Framed Sky

The Way We Treat Others

There is no other life than this one.  It doesn’t matter what one believes regarding death and the after life, this is the one life we have, right here, right now.  How will we live it?  What we do, what we say, how we behave in this moment is indicative of how we do anything.

I’m reading Rosemary Crossley’s first book, Annie’s Coming Out, which she wrote with Anne McDonald and was made into a movie in the 80’s, released in the US under the title, “A Test of Love.”   (As a side note, I find it interesting that the book’s title places Annie as the protagonist and yet the US film title suggests the therapist is.  By the way, I’m one of the people who believes both Anne and Rosemary were/are heroic and have nothing but tremendous respect for both.)

“Children, even children who could sit up, were generally laid down to be fed.  Their heads would rest in the nurse’s lap, and their bodies would lie across another chair placed in front of her knees.  This meant children were being fed with their heads tilted right back, a method called, for obvious reasons, ‘bird feeding’: gravity drops the food straight to the back of the throat, and there is no chance to chew.  Children were encouraged not to shut their mouths – a second mouthful immediately followed the first.  I have filmed a nurse feeding a child:  food is piling high on his face because he is unable to swallow it at the rate the nurse spoons it in.”  ~  Annie’s Coming Out by Rosemary Crossley and Anne McDonald

The above is, but one of many harrowing passages in the book describing the institution Anne McDonald was placed in when she was three years old.

“To be imprisoned inside one’s own body is dreadful.  To be confined in an institution for the profoundly retarded does not crush you in the same way; it just removes all hope.”  ~ Anne McDonald in the book Annie’s Coming Out

It is impossible to read this book and not feel horror.  Horror at our ignorance, horror that a place like St. Nicholas Hospital was more the norm than not, horror for all we didn’t understand or know, horror for our capacity as human beings to treat one another with such indifference and cruelty.  It is easy to console oneself with the thought that this happened more than thirty years ago and this sort of thing would never happen now, not here in the United States, not now.

This article in the NYTimes was written just last year, I wrote about it and other atrocities ‘here‘.

How will we view the “treatments” commonly used with Autistic children thirty, forty years from now?  What will we think about the commonly held views regarding autism and Autistic people.  Will we look back with the same horror I feel as I read Annie’s Coming Out?

Anne McDonald and Rosemary Crossley


Once Upon A Time (Part 3)

Part one and two are ‘here‘ and ‘here‘.

So this woman who was once a troubled girl, now the mother to two small children, one of whom was a beautiful little girl with curly white/blonde locks and chubby cheeks and dimpled knees, wondered how she ever gave birth to such perfection.  She was filled with gratitude and felt each of her children were gifts, tiny gifts that she was being given the opportunity to influence and even direct, but who were their own people, with their own temperaments and personalities, unique and wonderful in their own right.  She believed this fiercely.  But do not forget, this woman lived for many years of her adult life, prior to giving birth to her two wonderful children, believing she was bad.  She imagined that inside of her there was darkness, as though there was a bad seed deep within her soul and for many, many years she had tried to purge that badness from her being.  She believed she needed to be “fixed” and that left to her own devices she was fundamentally flawed and that if people got to know her, they too would learn this truth about her and it was only a matter of time before she was found out until others who had once felt similarly about themselves, convinced her that this was untrue.  These people showed her over time that in fact there was tremendous goodness within her and they taught her how to nurture that goodness and how to behave in ways that fostered it and encouraged it to grow and even flourish.

But then, now years later, she saw aspects of herself in her daughter.  Behaviors she used to do, but no longer did.  Her daughter loved to look at photographs and there were a great many to view.  Her daughter liked to sit on the floor with more than a hundred photographs piled in front of her and quickly scan them.  If one was missing, her daughter knew instantly and began to howl in great distress.  The mother watched in confusion as this scene unfurled.  The daughter, perfectly happy one minute, and then in terrible agony the next could not be consoled and would hurt herself by punching herself in the face or biting her hand or arm.  And something inside the mother clicked.  She recognized this desire to control her pain.  It took her back to a time when she needed things to be a certain way and when they were not she felt her entire life was unraveling and that her very existence was put into jeopardy and the only release from the horror was to hurt herself.  There was a kind of twisted logic to all of this, her self-induced pain, a pain that at least she could control, though awful, was not as terrible as her rampant and erratic feelings and somewhere along the way that self-induced pain made her feel she could endure, at least for a little while.

Now here was her daughter behaving, it seemed to her, in similar ways, expressing the agony she once knew so intimately.  She had no words to describe what she was witnessing, but she thought she could feel what her daughter was feeling, the despair, the pain, the fear that if the photograph was not immediately found she might die.  The mother believed this was what her daughter was going through and because she had lived through similar feelings she thought she would be able to help her.  She would provide her with the same sort of safety net she had been given.  A place to land, as it were, a safe space where her daughter could feel comforted, except that the things she said and did, did not provide her daughter with the comfort the mother expected and hoped she would feel.

You see, the mother forgot that her daughter was not a mirror of herself.  The mother forgot the thing that she knew when she gave birth to each of her children – that they were their own unique beings, quite separate and individual from anyone else.  She forgot all of this in her fear and worry over what she was witnessing and imagined her child was feeling and doing.  So she began to look outside herself for answers.  People, many, many people told her that they knew what would help and she listened to them.  These people spoke of her daughter using language all too familiar to the mother.  They used words like “broken,” “disorders,” “pervasive” and likened her neurology to cancer, which to the mother sounded a great deal like what she once thought of herself.  They said her daughter was part of an epidemic and that various methodologies would “treat” her disorder and might even reverse and cure her if done quickly and everyday for many, many hours.  The mother listened to all of these people and nodded her head as these people put into words what she had once believed to be true about herself.

Had she done this to her child?  Had she somehow passed along the worst aspects of herself to this beautiful, innocent child.  Was this some sort of karmic payback for all those years the mother had spent living a selfish, self-involved life?  Was her daughter the direct result of every mistake she’d made?  Was this really how life worked?  She could not believe this, at least not logically.  She refused to believe her daughter was being sacrificed for the sins of her mother.  She refused to believe there was some greater omnipotent power that would cause her daughter so much physical, emotional and psychic pain and yet she was terribly, terribly confused and somewhere she could not fully let herself off the hook.  Somewhere, unconsciously, she believed she was to blame for all that was causing her child pain and turmoil.  And if she was to blame, then she knew she, and she alone must make it right.

(To be continued) contemplation

Being the Adult I Want my Children to Become

“Are you the adult you want your child to grow up to be?” ~ Brené Brown from her book Daring Greatly.

Are we being honest here?

Because if we’re being honest, then – no, no I’m not.

I could hit the publish button right now and call this a post, but I’ve got a couple of things to add here.

From Daring Greatly – “…we should strive to raise children who:

  • Engage with the world from a place of worthiness
  • Embrace their vulnerabilities and imperfections
  • Feel a deep sense of love and compassion for themselves and others
  • Value hard work, perseverance, and respect
  • Carry a sense of authenticity and belonging with them, rather than searching for it in external places
  • Have the courage to be imperfect, vulnerable, and creative
  • Don’t fear feeling ashamed or unlovable if they are different or if they are struggling
  • Move through our rapidly changing world with courage and a resilient spirit

Now read every one of these things as a directive for yourself, like this:  Embrace your vulnerabilities and imperfections.  Feel a deep sense of love and compassion for yourself and others.  Carry a sense of authenticity and belonging with you, rather than searching for it in external places.  Don’t fear feeling ashamed or unlovable if you are different or if you are struggling.

I am becoming increasingly aware of how often my critical responses to my children are often reflections of my deepest insecurities. I don’t want them to make the same mistakes I’ve made.  I think I can control their future by making sure they understand just how serious all of this is.  I admonish my son for forgetting to feed the cat, while remembering the time my parents left me in charge when I was fifteen, two years older than my son is now, and how I forgot to feed the horses and had nightmares for years afterward.  I try to remember to phrase my sentences as – You forgot to feed the cat, what might help you remember?  Instead of my knee jerk response of “Did you forget to feed the cat again?  Why can’t you ever remember to do that?”  Because, wow, there’s a world of difference between the two…  and yes, I’ve said both.  The first is when I’m being the adult I want my children to grow up to be and the second is the adult I hope beyond measure they never become.

I worry about what a neighbor is thinking when he asks how we are and my daughter responds with, “Yeah, baby Teddy can’t go on the pogo stick.  Baby Teddy might fall and hurt his head.  Baby Teddy will cry and have to go to hospital…” and then describes how the doctors are going to have to put a breathing mask on baby Teddy.  I stand there feeling increasingly uncomfortable, because I care what our friendly neighbor thinks or because I’m afraid of what this might say about me and the things we put her through years ago?  And even as I am writing this, I marvel at how she really was answering his question, far more honestly than I ever would dare.

The truth is my children are closer to the adult I’d like to be, but am not yet.  I figure since my husband is hard at work figuring out the whole anti-aging thing, I’ve got at least as many decades ahead of me as I’ve got behind me to work on this goal.  I’m grateful for that, really.  I’m going to need every year I’ve got left.

“Have the courage to be imperfect, vulnerable, and creative”

Yup, check.

“Move through our rapidly changing world with courage and a resilient spirit”

Yup, check.   I got this.

Reflections in a puddle

Reflections in a puddle


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.


What Makes You Happy?

Happiness is….

My husband


Our son



A flamingo

Our fabulous kitty

Merlin and the Gator



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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Slow Progress – Autism

Nic and Emma driving back to the San Francisco airport last week.

I love this photograph because you wouldn’t know anything was amiss.  It was taken on our drive back to the airport as we were leaving Napa, California last week.

I don’t know whether other parents of children with autism feel this way or not, but any time I see Emma interacting with another child in “typical” or more typical ways, my heart soars.  Whenever Emma acknowledges Nic’s presence, plays with him, tries to be with him or shows a desire to be with one of her cousins I am filled with hope.  These tiny moments are like little beacons in an often dark tunnel.

“Without motivation she will not try,” one of the many specialists we took Emma to once said to us.

When I decided I was going to teach Emma how to hug a family member, it was with the hope that she might find she liked the sensation and might take the initiative to hug one of us without being prompted to do so.

“Put your arms around and squeeze,” I instructed her.  Sometimes she seemed happy to do so, other times, she didn’t.  Usually she put her arms around the person while keeping her body from having direct contact, her head jutting away at an odd angle.  I probably would have had more luck teaching her the art of the air kiss, she would like that (which says something about my waspy heritage).

As much as Emma does not appear to derive much pleasure from hugging while standing, she loves to get into Richard and my bed in the mornings and cuddle.  She aligns her body with mine and lies as close to me as she physically can.  Often she will pull my arms around her so they are holding her in a snug embrace.  Other times she will run up to one of us and give one of us a kiss or will climb into our lap.  I take it as progress.  It reminds me of a blog post I wrote over a year ago now when Emma embraced me as I was standing in the kitchen.  I was in shock because it was unprecedented.  Now those sorts of spontaneous embraces are more commonplace.  But it shows progress.  Or what I think of as progress.

One of the things about an autism diagnosis that makes me sad is the thought that my child may not have the experience of friendships.  But as Emma matures, I have learned to redefine what “friendship” means.  And I have seen that in Emma’s own way she does have friends, children she prefers to be with.  Emma’s friendships do not include secrets or talking or sleepovers.  They do not include making bracelets for each other and excluding other children in a show of preference.  Emma does not know about cliques, gossip, comparing, jealousy or what it means to be “cool”.  Emma is thankfully oblivious to all of those social constructs we try so desperately to shield our neuro-typical children from.

Emma is present, almost always in the moment.  I don’t think she worries a great deal about the future, she just is.

For more on Emma’s journey through a childhood of autism and her first spontaneous embrace, go to: www.EmmasHopeBook.com