Tag Archives: kindness

Cures, Fear, Freedom and Some Advice ~ By Emma

Freedom, Fear And Questions concerning Autism

Barking in the terrible terror that comes with being something so feared and hated.
Daring tremendous love for those who fear.
Healing tears for those who are in brutish pain.
Freedom from hurtful words about cures for being a part of the human race.

Help me so I can communicate.
Give me an education so I can learn.
Treat me as you want others to treat you.
Cheer me on.
Remind me of all I am capable of and focus on what hinders you, but don’t hurt me because I do not experience this world as you do.

We can learn from each other, but learning requires an open and willing mind.  Too many have given us fear instead of hope.

Which, when, why, who, where – we ask.

We matter.
We are all capable of being kinder, more compassionate, more loving to others and ourselves.

*A word from Ariane – Emma became very upset while writing this and began banging the table with her fists and then bit herself.  When I asked if she was able to continue, she typed, “No.  No more.  No more.” – I asked her if she was okay with me adding this here.  She typed, “yes.”

Emma ~ 2015

Emma ~ 2015

“Self-Knowledge Avails Us Nothing”

There are things I forget to talk about with my daughter.  Things that someone will mention or I’m reminded of in some other context and suddenly I’ll think – Gosh, why haven’t I discussed this with her?  These are things a parent would typically talk to their child about, but that because my daughter cannot easily communicate her thoughts I, without meaning to, do not immediately think to talk about with her.  This is the impact my limiting ideas about language and not being able to communicate through spoken language have on my daughter.  It doesn’t always occur to me to discuss with her a great many things until I am reminded.   Out of respect for my daughter I am keeping this post purposefully vague.

I am moving along here, learning as I go and continue to make a great many mistakes.  I have never deluded myself into believing the – making mistakes – part will end, the most I can hope for is that I won’t continue to make the same mistakes, but even so, I do.  I seem to need to repeat the same lesson many times before I am able to make lasting change.  It is a mistake to believe non Autistic neurology does not have trouble with transitions, generalizing information, learning something taught and immediately changing behavior to demonstrate this knowledge.  I will often know something, yet it will take many attempts before I am able to put that knowledge into practice.  You could say that my actions lag way behind what I know or believe.

In the 12 step rooms there is a saying – “self-knowledge avails us nothing.”  What is meant by this is that we can intellectually know something and yet that knowledge does not produce a change in the way we behave.  The only way to change is by doing something differently.  How easy that sounds and yet, look around, people have struggled with this since the beginning of mankind.  Addiction is the obvious example, but there are other, far more subtle things that are great examples of how we want to do something – eat better, exercise, be polite, more friendly, etc –  we know it would be better if we did whatever it was, only to find ourselves unable to do it.  Behavior modification, were it as helpful as many seem to believe, should have helped anyone who has ever attempted to “just stop” and yet it has shown itself as useless.  Unless behavior modification is used in its most extreme form, which I would argue is not dissimilar to torture, in which case it will and does produce short-term change, though at a terrible cost to the person being “treated”, it does not help those of us who are trying hard to change our less than ideal ways of coping with discomfort, fear, pain, and suffering.

Change is hard.  Changing the way we act is even harder than changing a belief.  Yet, we expect and ask children to change all the time.  We tell them something and then when they do exactly what we’ve asked them not to do, we wonder why.  Except that they are behaving the way most of us behave.  Adults are no exception to this.  Now add a neurology that makes communicating more complicated and all kinds of misunderstandings develop.  Conclusions are drawn, ideas and theories are created to explain, and yet…

Recently Emma was asked about something that happened at school.  She wrote, “if every time you tried to speak, the wrong things came out of your mouth, how would you feel?”  We live in a society where people knowingly say and do hurtful things all the time, yet those people are not put in institutions, given random medications against their will, labeled as “low functioning, ostracized, given electric shocks, condemned and treated as though they were criminals.  I’m thinking of a number of radio and talk show hosts whose ratings soar the more outrageous and venomous they are.  These people are rewarded for such behavior!  I’ve never met a parent who said, “I want my child to grow up to be rude, disrespectful and a bigot.”  And yet…

Today I will suggest a few topics and ask both my children what they’d like to discuss.

Em & N. ~ 2010

Em & N. ~ 2010

“There is Wisdom in the Echo Silence Makes”

“I want to talk about autism, but I am dear-like because badly needed information is angering.

Assuring many people understand about neurology they do not have is difficult.

I want the world to have another opinion to work with.

I am happy but people find that impossible to believe.  That causes me anxiety.

Acceptance and kindness are crucial for all people.  As one who is constantly thought less than, forgiveness is like a soothing bath and the talking people might learn more if they did not talk so much.

There is wisdom in the echo silence makes.”

Emma just wrote this.  She asked that I put it on the blog.

“There is wisdom in the echo silence makes.”

It turns out we are living with the buddha.

Emma ~ 2004

Emma ~ 2004

A Look Back and Then Forward…

Em wrote just now (and said I could publish what she wrote here):

“I want to talk about the New Year.

“I know it was an important year to talk to the world.  I need people to understand what it is like to be Autistic.  I could be daring by saying that, but I think it is the only way others will become more tolerant of those of us who think differently than most, and it is opportunity that both separates and connects.”

I have so many thoughts about this…  “it is opportunity that both separates and connects.”  That sentence could be the topic for an entire semester in graduate school.

After Emma wrote this, I asked her if I could share it with Richard and on here, to which she nodded and wrote “yes.”  Richard and I had different responses to the word “opportunity” but when asked to clarify, Emma was already listening to her music and as I told her our study session would last 25 minutes and no longer, I did not press her to elaborate.

I will end this brief post by saying this past year has been a monumental one for me and my family.  As I look back on previous years, there have been none that can compete.  Here’s to embarking on another incredible year filled with curiosity and wonder.  Thanks to all of you who have read, commented and/or reached out.

As Emma has advised many times over the last few months, “Be kind to each other” and “everyone should be treated kindly and with love.”

Happy New Year!

Self portrait

“I Want to Know What God Thinks About Autism”

*Emma approved this post before I published it.

Yesterday was our second day working with Soma.  And just when I thought I could not be more blown away by anything Emma wrote, she wrote the title to this post.  It was in response to a conversation about Mesopotamia, ancient civilizations, buildings and building materials, which led to Soma discussing the types of structures built, one being temples.  Soma asked Emma why people would go into a temple, to which Emma wrote, “pray”.  Soma then asked her if she went into a temple what would she pray about.  Emma then wrote, “I want to know what god thinks about autism.”  

I have to interrupt this to say, I am not a believer.  I had a moment, a very brief moment in my teens and again in my thirties when I so wanted to believe, I needed to believe and yet still could not really believe in any way that made sense to me.  God is not something I obtain any solace or strength from believing in, and well… truthfully, I’ve stopped trying.  I don’t need to believe.  Having said that, my husband and I talk about god, religion, spirituality, the practice of acceptance and staying present, meditation, doing the right thing, and what a power greater than ourselves means on any given day.  So there is a fair amount of “god-like” talk going on.  In addition, my mother is a theologian and has taught bible study classes for many decades.  She used to attend a Torah study and I believe does again now.  She is one of the most knowledgable and interesting people I know of to talk to about religion and god.

The point is, Emma has certainly been present to a great many conversations about god, the bible and religion.  But never has she said the word “god” let alone, used the word in a sentence.  And it must be said, we never thought to ask her…   When both children were still very young I bought a number of children’s books on a variety of religions, and made some general statement about the importance of learning and deciding for yourself what you believe.  We still have those books; I’ve never seen Emma look at them, but that doesn’t mean she hasn’t.  And anyway, as I said, it’s not as though she hasn’t heard a great deal of talk about God.

Later I asked Emma if she believed in God and she wrote simply, “yes”.

If there is a god, I’d like to know what god thinks about autism, too.  I’m guessing here, but I should think god is embracing and celebrating all neurologies.  After all, most people I know who believe in the existence of god believe that god created us the same and equal and beautiful beings, given the gift of choice.  We can choose to act with love, compassion and kindness or we can choose to behave in hurtful ways that cause tremendous pain and suffering.  Either way, according to those I trust and respect on the topic, God is always there for us, all of us, all the time, and without exception.

Em Texas

Justifying Actions

I just wrote an angry rant.  As I was getting set to publish it, someone tweeted me about something unrelated.  They wrote that in order for people, who may be feeling desperate, to hear what you (the universal/general you) have to say, there is a need for kindness, and it stopped me in my tracks.  Kindness…  In my fury I had forgotten all about kindness and I felt like a balloon that had just been popped. Pfssssst…  All that lovely anger that was protecting me from all those other feelings I have, oozed out.  Pffffffssssst.  And you know what I was left with?  Sadness.  Overwhelming sadness and something else.  Fear.  Tremendous fear.

Sadness and fear do not make me feel powerful.  Instead they make me feel vulnerable.  I don’t like feeling sad and vulnerable.  I want to feel powerful, but all of these things are illusions at best.  Just because I feel powerful does not make it so.  Just because I feel vulnerable does not mean I am.

Someone wrote on a public forum that they were heart-broken over a mother who tried to kill herself and her child.  They followed that thought with this, “she was given a burden she could not bear” and I felt like someone had kicked me in the solar plexus.  You see, I take those words personally.  They may as well have said that they believed that about one of my children.  Please, please, do not say a child, any child is a burden.  Even if you believe this to be true, do not say those words in public.  Do not.  This is what private support groups are for. This is why people see psychiatrists, psychologists, counselors, this is why we call close friends whom we love and trust and who we know will honor what we say in confidence and keep what we say confidential.  In moments of terrible pain all of us can and do say things that upon further reflection we wish we hadn’t.  We think things we do not really believe in moments of upset.  We may even act on these things that we think and say, these are the times we wish we’d said and done nothing.

Not every feeling must be acted upon.  Not every thought needs to be said out loud.  Please, when you say someone’s child is a burden and that it was too great to bear and that this was why they tried to kill that child, it places a stigma on all our children.  This kind of language terrifies me.  I am terrified someone who believes Autistic children are a burden will come into contact with my child and treat her accordingly.  Please if you believe Autistic children are a burden, if you feel their neurology makes them inferior, do not go into the field of autism.  Do not convince yourself that you will be able to help that person, you won’t.  Feeling sorry and pity will not help or make that person’s life better.  In addition, when we believe another person is a “burden” it is being suggested that there are situations when it is acceptable to not be held responsible for what we say and do.  It is being suggested that, to hurt someone we believe is a burden, or worse, take that person’s life, is a reasonable thing to do.  It’s not.  It’s not okay.  We cannot, in our desire for compassion, allow this to ever be okay.   It is not okay.

Finally, if you truly believe someone, whether it is your child, someone else’s child or just in general, is a burden, please talk about these feelings and thoughts with a professional or someone you trust who can help you work through these beliefs with compassion and care.  If you do not know where to turn or do not understand why this kind of thinking is problematic, email me privately so that I can try to better explain or can find someone who will be able to explain this in a way you can hear.  My email is:  emmashopeblog@gmail.com

A Recipe For Living a Good Life

Last night Richard and I had one of our conversations.  It’s the conversation that starts with, “If only we’d known what we know now…”  The conversation that continues with, “If only we’d known our friends, particularly the ones whose neurology we don’t share, the ones who are Autistic…”  It’s the conversation that ends with both of us looking at each other and shaking our heads until one of us says, “We would have done everything differently…”   And then the other joins in with, “Literally.  We would have literally done everything differently!”

One of the biggest motivators I have for continuing to blog about autism is this idea that everything would have changed had we known what we know now.  How different our lives would have been had our introduction to autism not been abject fear, but to adults who are Autistic.  How different our approach would have been had we not reacted to the news of our daughter’s neurology with terror.  How much money, time, energy, not to mention pain would have been avoided had we not listened to all those non-autistic people who greeted our daughter’s diagnosis with, “Here’s what you need to do…”  “Here’s the name of a therapist/neurologist/homeopath/nutritionist/DAN doctor, call them now!”  “You should try…”

I’ve written about all of this before, but since I typically blog Monday through Friday, many of you may have missed those posts, so here are just a few…

What I Wish I’d Been Made Aware Of When My Daughter Was Diagnosed With Autism
How Fear Drove Me To Pursue A Cure
We Are in This Together
A Fantasy For Parents of Newly Diagnosed Autistic Children
To The Person Who Googled “I Don’t Know if I Can Handle Autism”

What we were told about autism was WRONG.  Everything we were told during those first few years after Emma was diagnosed have NOT proven to be true.  Having an Autistic child does not mean the entire family will be dragged down.  No one need “sacrifice” their life to support another, in fact, our lives are enhanced by each member of our family.  Each of us brings something unique and special to the family. Having an Autistic child is not the same as having a child diagnosed with cancer, this comparison is incredibly hurtful to my child, to your child, it is offensive to all of us.

We have been told all kinds of things about our daughter by non autistic people.  Not one of their predictions has come true.  NOT ONE!  Read that again.  Nothing we were told would happen, actually has!   Think about that.  Being given an autism diagnosis for your child is like listening to an anchorman predict the weather a year from now.  But we believed every single one of those pronouncements and then behaved as though each dire prediction was fact.  If I’d known all the people I know now, the people I’ve interviewed, whose blogs I read, all the people I am fortunate enough to call my friends, who have changed my life and helped me understand autism and what it’s like living in a world that doesn’t accept them, growing up with parents who believed they were doing what was best for them, but who were being told the same sorts of things we were told… Had I known all those people when Emma was first diagnosed, our response to the pronouncements and predictions given to us would have been to laugh and walk away. Literally.  We would have laughed and walked away.

We would not have hired the agency who provided us with round the clock therapists.  We would not have shuttled Emma from one doctor to the next.  We would not have spent all those nights lying awake, staring at the ceiling fearing what would never come to pass.  We would not have lost all those years, years we could have spent actually enjoying and loving our child, but that were spent in fear, engaged in a war on her neurology.   All those years when Richard and I felt beaten down, could have been spent embracing this amazing being who has taught us so much.  The challenges any parent faces, exhaustion, sleepless nights, worry, these would certainly have been a part of our story, but the terror… the terror did not have to be a part of it.

So here’s the truth about my Autistic child:

She is a human being with desires, wants, needs, emotions and feelings, just like any other child.  If I treat my (Autistic) child the way I would want to be treated, with unconditional love, respect, encouragement and support, I will have been a good parent.  If I can be kind, patient, vulnerable and willing to examine my preconceived beliefs about what it is to be a human being, while making amends for my mistakes;  I will have led a good life.

Emma and Nic ~ 2003

Em & Nic - 2003

Accepting Ourselves So We Can Accept Others

Accepting myself has been an ongoing process and it began well before I became a parent and got married.  It began more than seventeen years ago when I was flailing about, bulimic, unable to stop using my substance of choice (food) the way a drug addict uses crack.  I have written about this period of my life before ‘here‘, ‘here‘, ‘here‘ and ‘here‘ so I won’t go into great detail again now.  Suffice it to say, I was out of control, scared, suicidal and I couldn’t stop binging and purging.  And then someone who had once been an active alcoholic and obese, with more than a hundred pound maintained weight loss, said to me, “What if you accept that this is where you are?”

I remember I looked at her in shock.  Even now, thinking back to her words I find I am holding my breath.  It was such a stunning statement.  Never had anyone suggested such a thing.  To me it suggested complete defeat.  It was blasphemous.  It was the single most heinous suggestion I’d ever heard.  I think I said something like, “Are you kidding?  What do you mean?”  I can no longer remember her exact words, but she said something like, “You just told me you can’t stop binging and throwing up.  You just said you are out of control.  You just gave me a detailed description of what you do, how completely depressed you are, how you’ve tried for twenty-two years to control yourself and yet here you are, still unable to.  What if you told yourself – okay.  This is where I am.  I am out of control.  I hate it.  I hate feeling this way.  I can’t stop.  I can’t stop hurting myself.  I can’t stop binging.  I can’t stop throwing up.  I can’t stop thinking about food.  I can’t stop abusing myself.  This is where I am.  I accept that I am here.  What if you did that?

I didn’t have an answer.  I couldn’t think.  I felt like I was being given a pop quiz I hadn’t studied for.  I stared at her and then she did the next thing that I could not understand or wrap my mind around.  She opened her arms in embrace and hugged me.  I remember my confusion, the feeling that this couldn’t be right, that she was unhinged, that the only thing that could save me from self-destruction was more self-criticism, more self-loathing and more self-recrimination.  But I also knew what she’d said made some sort of bizarre sense; for twenty-two years I’d been upping the self hate talk to no avail.  All that criticism I kept dumping on myself had gotten me exactly where I was – at a dead end.  So I took a deep breath, held onto her hand and took a metaphoric leap into the unknown.  The unknown of acceptance.

Just in case you’re wondering, it didn’t happen as quickly or as easily as this may sound.  That leap took years of practice, of gently reminding myself that whatever I was feeling, whatever I was doing, I could accept that in that moment I was where I was.  It took years and years of cultivating awareness, of being able to see when I took up the whip that I could also put it down again.  Kindness, compassion, gentle reminders and acceptance, this is the road I have tried to stay on.  As I said, this is very much a work in progress.  Some call it a ‘practice’ because ‘work’ sounds difficult.  My experience with acceptance has been that it is “work”.  It is not easy for me.  It does not come naturally.  I have stumbled along the way.  I continue to wander off at times, only to be brought back, gently, kindly and with compassion by others who are on the same path.  It takes gentle reminders, many nonjudgmental nudges to move back onto the path of acceptance.  But I have seen the light and know to follow it even when it grows dim.

My experience with acceptance regarding autism has followed a similar trajectory.  You might think – why didn’t she ‘get it’ right away?  Why did it take so long for her to remember that what had worked for herself would work with this too?   And the only answer I have is this – I forgot and I couldn’t see that they were connected.  I didn’t see the value in accepting autism because I didn’t see my child as Autistic.  I saw her as having been diagnosed with a word I feared and didn’t understand, and therefore was not going to accept.  Again it felt like defeat to accept.  It has only been a little over a year that I was able to make the connection.  And the thing that helped me make the connection came in the form of yet another person who accepted me and all my fear, guilt and shame with compassion.  Once I was able to make the connection, became aware of my lack of acceptance and allowed that to be, without adding criticism and judgement to it, was I finally able to begin the process of true acceptance.

Acceptance of ourselves and where we are in this moment opens us up to the wonder of all.

Pascal, Emma, Harvey & Henry typing to each other – April, 2013

H &E type


Let Us All Be Safe

My favorite memories of Christmas are those spent at my grandmother’s house in Colorado when I was a little girl.   Every morning I would wake to see the snow covered mountains outside my bedroom window and snuggle deeper beneath the warmth and weight of the woolen blankets on my bed.  The smell of freshly baked orange buns and cinnamon rolls filled the air.  I grew up in Northern California not far from the Pacific ocean, so snow was a novelty and cause for great excitement.  The thrill of being in the mountains in Colorado during Christmas was something I anticipated with great excitement and impatience.   My grandmother always bought my sister and I a dirndl, the traditional German dress, to wear on Christmas eve, while my father, who was Swiss wore a pair of black leather lederhosen with white socks embroidered with green foliage, worn with black velvet slippers and a black or red cashmere turtleneck sweater.  Picture the Sound of Music with Christopher Plummer as my father and me as the youngest child, Gretyl and you get an image of how we looked on Christmas eve, though the similarities pretty much stop there.

When I had my two children I had an idea that I would dress them in lederhosen  and a dirndl, and over the Christmas holidays I would stay up late making yeast breads of various kinds and baking them early the next morning so that my children could have similar memories.  However this never came to be, though Em would probably love wearing a dirndl as she loves dressing up, just as I did when I was her age.   But as a parent I’ve learned that many of my memories do not need to be repeated, that my children will have their own memories and that they do not match mine is as it should be.  I have come to see that this is a good thing.   I had so many ideas about what it was going to be like to be a parent and almost all those ideas have proven wrong in the best possible way.  Letting go of my ideas about how anything should be has been a great gift, not just in parenting, but in life.  I did not come to this easily or without a fight.  And I still forget this truth often.

But I am grateful when I remember.   There is so much I cannot control.  In fact the only thing I have within my control is my own behavior.  I keep coming back to that over and over again.  I cannot control other people’s memories or behavior or prejudices or actions.  The only person I have any control over is me.  For today, let me behave well.  Let me be kind, loving and generous.  Let me give more than I take.  Let me help more than hinder.  Let me be the parent my children need and not the one I thought I should/would/was supposed to be.  And let us all be safe.

December 2009

xmas family-09

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“Nearly Every Moment…”

My friend Paula Moerland allowed me to post this.

Nearly every moment of my existence
Has been filled with the necessity of caring for this body
This emotional body, so distraught
This mental body, so busy
This physical body, so out of balance

I am not selfish

I am exhausted

When I first read this I had to close my eyes and sit very still.  And as I sat, I remembered something my father said to me so many years ago when he was in a wheel chair. He told me constant pain was exhausting.  I was surprised by this.  I had never before considered what it must be like to be in constant pain.

None of us are getting out of here alive and while we live our lives there’s going to be pain, but some people have to endure terrible suffering.  Too awful for most of us to fully understand or even know.  All of us know someone who has dealt with inordinate pain and yet somehow managed to find a way to transcend it, or used it to create something magnificent.  Those people are guides.  I hear their stories and am in awe of their ability to cope with physical and mental abuse often at the hands of those they should have been able to trust, the very people who should have been there to comfort them, to care for them , but instead turned on them.  Yet despite those wounds they are trying to transcend it, they have the desire to rise above it, not give into it.  There is tremendous power in that.  We humans have an astonishing ability to not only endure, but create astonishing beauty.

Thank you Paula for sending me your beautiful words.

New York City in October