Tag Archives: Relationship

The Mean Voice

I have struggled with a mean voice in my head my entire life.  “You messed up,” “You can’t do anything right,” “You’re a failure”, “What were you thinking?” “Why did you do/say/think that?”  “How could you not have known?”  When I was young I thought I was the only one who had it.  I believed the voice.  I thought it spoke the truth.  I felt crushed by it.  It was a condemning voice and I thought it would help me become a better person if I listened to it.  I was wrong about that.  These days I don’t allow myself to believe it, but now and then I can’t help myself and those are the days when everything is harder.  Those are the days when the people I love will suffer because that voice isn’t content to stay internal for long.  No matter how hard I try, no matter how much I tell myself I’m not going to repeat those hurtful words to someone else, I end up doing so because self-hatred is never kept completely contained.  Those of us who struggle with self loathing tend to hurt others a great deal, which then feeds our self-loathing.

“Self knowledge avails us nothing.”  ~ Big Book of Alcoholics Anonymous.

Awareness, acceptance, action.  These are the steps I know to take if I want to change my behavior.  These are the things I must do on a daily basis, sometimes hour by hour.  These are the things I stumble over, like giant boulders in my path.  Someone else yelling at me to stop listening to the voices does NOT help.  Someone else scolding me for having hurtful voices in my head only ADDS to my stress and the noise, it does not lessen it.  Awareness – I have to acknowledge I’m listening to the cruel voice.  Acceptance – I have to accept I’m in a dark place, that this is what is going on, that this is my reality in this moment, without judgement, without condemnation.  Breathe.   Action – this is the most difficult piece.  What actions can I take now that I’ve become aware and have accepted that this is where I am?  Often action has nothing to do with any of it.  For me action works best in the form of a small or big act of kindness. If I’m in self-pity or when I have tremendous ego, an anonymous act of kindness is by far the most helpful and centering thing I can do.

Feel the pain of the moment but do not be controlled by it.  Feel the anger/irritation/impatience, but do not allow it to take the lead.  Can I do this?  Can I just allow myself to be?  Can I reach out with love instead of anger?  If the answer in this moment is no, then can I just be silent, without turning my anger and frustration inward?  Can I just do nothing at all until this passes?  These things are easy to write about, but so much harder to practice.  And yet I must continue to pick myself up when I fall and practice what does not come naturally or easily because that other road is one I have been down.  I already know where it leads.

For an expanded upon and wonderful post on the mean voice please visit: hereirawr’s Balance Isn’t a Destination and Gray IS Gorgeous!

Road to hell

 

Friendship – Another Myth Regarding Autism

My friend Ibby is here staying with us for a few days.  It’s a working visit, but that doesn’t take away from the joy we are all experiencing because she is here.  Who says work cannot also be a blast?

Emma and Ibby 

Em and Ib

I’ve spoken of Ibby many times on this blog (here, here, here and here to link a few) because Ib has, more than any single human being, done more to change my views regarding autism and my daughter than any other person.  I know that may sound hyperbolic, but it’s actually not.  It’s true.  Or as Ib would say, “Fact.”  And it is.  Fact.  Another fact is the gratitude I feel toward her.  Just tremendous gratitude for opening my eyes, not just to one thing, but to multiple things.  As an example, here is just one little thing that happened as a direct result of Ib.

Ib gently urged me to watch the documentary Wretches and Jabberers.  When I did not immediately watch it, she reminded me and again encouraged me to rent it.  I think she had to remind me three times, before I actually sat down and watched it.  And because I watched W& J, when I presented at the Autcom Conference last fall I went to hear Harvey, Tracy, Pascal and Larry’s presentation on supported typing and because I went to that presentation I had the idea that maybe, just maybe it might be the thing that could help my daughter communicate more reliably and because I had that idea I approached Pascal and asked if he was ever in New York City and because I asked him that, Pascal began helping us learn to support Em and because we started helping support Em I began to understand what presuming competence really meant and on it goes like the “If You Give a Mouse a Cookie” books, one thing leads to another and another and suddenly you look back and see that this person, this one person has influenced another (me) and the ripple effect is so far-reaching and beyond anything anyone could have imagined.

The Wretches and Jabberers example was just one example of one tiny thing Ib had a hand in.  I could name at least a dozen or more much larger examples, like the conversation (documented ‘here‘) we had about language and my daughter’s specifically and how sometimes she says things that seem completely unrelated to anything that’s going on, but how it is related, even if it’s not related in any way I can identify.  Sometimes it’s a leap-frog kind of association, often there’s an emotional component too, so when she suddenly blurts out, “No not going to see motorcycle bubbles” I now know Em is thinking about visiting her Granma in Colorado or is anticipating an electrical storm or watching the 4th of July fireworks display from the ranch. There’s excitement and maybe some anxiety and even fear and eager anticipation.   I know this now because Ib has helped me understand and has taught me how to “lean into” her words and not try to do a word for word translation.

Ib and I have been working on a book together about Autism, Inclusion and Friendship.  As a result I am thinking a great deal about friendships and relationships in general what they mean and how they develop and how the very definition of friendship is about inclusion and support and accommodation and giving each other slack and cheering each other on and appreciation and gratitude and being there for the other person.  It’s a mutual give and take and it’s reciprocal.  Relationships are basically what make this world and life worth living.  Ironically friendship was the thing I wrote about on this blog’s first entry.  It was what I wanted my daughter to experience, but feared she might not ever have, because I believed what I was being told about autism and that myth surrounding autism and being alone.

Over three years ago, when I started this blog, I wrote, “…hope that we may help our daughter Emma, now 8 years old, lead a life that includes deep friendships and the powerful bonds that result from being able to communicate with one another.  A life that is enriched by our interactions..  this is what I dream of for her..”   Who knew that not only would my definition of what constitutes “communication” completely change, but so would my mistaken ideas about my daughter’s ability to have friendships.  As an added plus Ibby is not only in my life, but in my entire family’s!

So yeah, Ib is really important to me.  I love her dearly; we do all the things friends do when they get together: confide in each other, laugh, hang out without having to talk, hang out and talk and talk and talk, cry, and when we aren’t physically together we stay in touch.  But as with all really close friends, Ib is in my mind and heart regardless of where she is.  I think about her and when we haven’t spoken for a few days we reach out to each other and connect, sometimes briefly if we’re both busy, but she’s always “here” in my heart.

As Ib has said, “Friendship is Fact.”

Vanilla cake with vanilla icing – made by Emma, Nic and me 

Ib's Cake