11/20/2013

In memory

The dream I was pulled from this morning lingered all day, lingers still. It had me pulling out yearbooks and examining pictures, remembering.

On rare occasions, I am graced with a brain that chooses to insert those I've lost into my dreams for a visit, and last night, I dreamed I was visiting with one of the most important teachers and people in my life. Tomorrow marks the thirtieth anniversary of his death.

I was beyond lucky to have Mr. Roberts as a math teacher in junior high. He was more than just a teacher. He was someone you could talk to about anything. He always had time to listen, a ready smile, and an easy confidence about him that immediately left you feeling there was nothing you couldn't accomplish. He believed in his students.

He had a profound impact on me that still exerts its influence on me today. He went beyond the basics. He cared about all his students. Remembering him throughout the day, his warm smile still vivid in my mind's eye, has been a lovely gift.

To the best teacher I ever had, who made me want to be that same kind of teacher, you are still remembered and still missed.

11/19/2013

A Little Dab Will Do You

Early mornings sitting in my recliner with the heated throw wrapped around my legs and hips, with the back massager going full force, the vibrating sounds making me all but deaf...my fingers swollen and painful--this is my reality. Others pour me coffee and boy, we make sure I never drink out of a regular glass or cup with no lid. I already dump the spill proof cup several times a week, leaving interesting stains across the carpet, the chair, the bed linen, sometimes the books that pile up around wherever I spend my time.

It's quiet now, except for the loud vibrating noise between my back and the chair and the fans that are running, to keep air flowing around and to create noise to drown out the tinnitus that plagues me. I use the massage cushion enough that I hear the vibrating noise even when it's not on--I now have my own internal white noise machine.

Rick has left for work already, the kids are still asleep, the cats are nowhere to be seen, the yorkie is lying on Rick's bed, and it's almost as if I am alone in the house. Almost. Hmmm.

Solitude is something that shouldn't be taken for granted, that should be savored. This opportunity doesn't come often enough: the chance to sit in relative silence, in relative aloneness and practice one's breathing (love you, Rose, for your reminders that mindfullness is important and worth taking the time on) and working on changing old patterns of thought and behavior (love you, Kathleen, for your support and insistence that change is good and right).

Lately it seems as if the universe is conspiring to remind me of lessons once learned and then forgotten. From loving friends to books to even the most unlikely television shows, gentle shoves have been coming at me, telling me I got off my path, got caught up in the whirlwind of life, started resisting it instead of leaning into it.

Leaning into it, embracing the experience, living it, feeling it and moving through it...instead of walling myself off and trying to go numb.

Another dear friend (M) told me to scream awhile back, and Kathleen suggested it recently, as well. Scream instead of stifling it, shoving it down.

This has not been an easy year, but I think that easy years are like unicorns. We convince ourselves we should have easiness, that we have earned it, deserved it, even that we can buy it. We can't, and easy isn't worth it, anyway. Nothing is learned from easiness.

Wisdom only comes from going through the depths and coming out the other side, battle-weary and bruised, but out the other side...and that's what counts. Can we come through the experience of life to the other side still whole, still with our depth and range of emotions, in fact with a wider range of emotions, with greater compassion, with empathy for all?

And empathy means hurting when we see hurt. It means answering the call to change the world by changing ourselves first.

Rose reminded me of music, and I shared with her that "In the Garden" sung by Willie Nelson had been my favorite since childhood. I played it again recently and the tears flowed. No, I'm not religious, but I hope I'm spiritual and trying to connect to the greater mystery that is. It's still the most beautiful song I know, next to "Hallelujah," for getting emotion to the surface.


11/18/2013

The Divide

Suzanne Wright's recent column about three million missing kids (you know, autism) certainly energized the autism community into speaking up about what autism is.

And the reality is that autism doesn't look the same, not even in families where multiple members are on the spectrum. My three, for all that they have in common, also have much that is different.

The good part of all this heated writing going on is that we're talking about autism and what it means in our lives. The bad might be that we're having a hard time listening to others.

As usual. Our vantage point is ours, and sometimes, in our desire to have our realities recognized, we fail to remember that others want the same thing: we want to be seen and heard.

Autism Speaks effectively silenced all those individuals on the spectrum last week. Mrs. Wright wasn't writing as a concerned grandmother, but as the co-founder of the most powerful autism non-profit. She made it seem as if she and her organization had the inside on what autism is and it wasn't about autistic individuals, but about the tragedies that are the lives of people dealing with autistic individuals. It was foolhardy, disrespectful and false.

However false it was, though, it doesn't erase the fact that while one side likes to peddle the autism as tragedy, the other extreme wants to portray it as a gift. Except that's not true, either.

Moderates, middlemen and women, and people who have exposure to the continuum of the spectrum tend not to be hyperbolic. And so they don't get a whole lot of attention.

Autism is a spectrum, both across the population and the individual's lifespan. Bobby is nothing like he was as a child. No one could have predicted just how different he would be. No one can guess just how much more he will learn and grow, either. His story is not written. Neither are my daughters'.

If we really want to help ALL autistics and their families and our society, then we have to be honest and open and accepting that autism comes in many flavors.

If we want society to accept ALL autistics and other disabled individuals as valuable and worthwhile and equal, then we need to treat them that way in our smaller community.

We should be able to reach out and care about everyone and listen to his or her reality, his or her story, and offer compassion, assistance where asked for and needed, and most importantly respect for each person's integrity, whether on the spectrum or off.


11/13/2013

F*ck You, Autism Speaks.




Suzanne Wright, on behalf of my three wonderful, vibrant autistic children, I salute you with my middle finger. How dare you suggest that my family is not "living"?

Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house. That is - if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes? Climb the furniture? Raid the refrigerator? Sometimes – the silence is worse.
These families are not living.
They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely - 24/7.
This is autism.
Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future.

As to life lived in the moment, you bet--lived fully, experienced completely. In good times and bad. But not in despair. Yes, occasionally in fear, but that's because of fearmongers and hate speech generated by people who view autistic individuals as less than.  Not because of my children. Yes, they'll need help. But they'll have each other and our community who know and care about them.

It is a disgrace what you have done, despite the concerted effort of autistics and their allies to alert you to the harm of your rhetoric and actions. You spew hateful speech and then you condone and endorse the torture of disabled individuals by letting the Rotenberg Center be at your resource fair. You have declared war against an entire population. How can it be seen any other way?

There is no national plan to build a city for 500-thousand people.

Are you suggesting, Mrs. Wright, that autistics be segregated from society ala Escape from New York?


I would say shame on you, Autism Speaks, but your founders and leaders have no shame. So, instead, I say screw you. I've tried working with you, advocating a change in your message and beliefs. I've pushed for you to stand up and against torture.

There is no working with Autism Speaks, no point in continuing a dialogue in hopes of influencing them as long as people like Suzanne Wright wield the power.

So, I can promise you this. I will make sure my community knows the harm in Autism Speaks' rhetoric. I will provide information on other organizations and point to the importance of supporting those who actually experience the condition and listening to them.