Category Archives: Family Moments

At Home in the World

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It is finally here! At Home in the World by Tsh Oxenreider is a beautiful memoir of a young family traveling the world for 9 months.

It really took me back to our days as a young family: adventures in our own back yard, state parks, national parks, living in Germany, and living in far eastern Turkey.

I wouldn’t trade those days for anything!

Gotcha Anniversary 2

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Wendell Berry

Because this man can say it all in just a few words:

We’ve been talked out of love, mercy, kindness. We’ve got to take those things back.

For any family members or friends who might be “on the fence” about contacting their Senator about Sen Jeff Sessions’ nomination for the Attorney General — He said in May 2000, disabilities protections for students with disabilities was a reason U.S. public schools were failing.

“We have created a complex system of federal regulations and laws that have created lawsuit after lawsuit, special treatment for certain children, and that are a big factor in accelerating the decline in civility and discipline in classrooms all over America. I say that very sincerely,” Sessions said.

As Michael’s mom, I have fought for 20 years for people to respect the dignity of all people. When he was diagnosed I was asked “What’s wrong with him, is he retarded or something.” That stuck in my head and turned me into an advocate and activist. We have left churches because of bullying and belittling.

I ask my family and friends to stand with me and call your Senator to oppose Jeff Sessions. He will not be good for families with special needs.

 

Read about it:

http://www.snopes.com/jeff-sessions-slammed-protections-for-disabled-students/

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In Indiana you can call:

Senator Joe Donnelly (202)224-4814; (812)284-2027

Senator Todd Young (202)224-5623; (317) 226-6700

IN District 6 — Rep Luke Messer (202)225-3021; (317)421-0704

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What I’m reading: Hidden Figures, The Father Brown Mysteries, The Snow Child

What I’m listening to: Harry Potter #2 (yes, again)

What I’m watching: Timeless, The Return of the King

What I’m smelling: toothpaste, coffee with almond milk cream

What I’m pondering: a world in which my son wonders if it is “Safe to have autism.”  seriously , no joke, he’s wondering.

In my house: a new infinity scarf in a lovely dark grey wool that seems like it will never be done, good German chocolate, and chocolate covered almonds back in rotation. A new bed.

pen, paper, stamp

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Yesterday Hannah and I sat together in the living room writing out our weekly postcards. I’ve decided to use mine to educate my representatives about the nature, challenges, and blessings of parenting an adult with autism.

I realize I can’t appeal to their sense of fairness. They don’t live our lives. They don’t face our struggles. Nor do they share our joy. Nor do they share our fierce determination to protect the one we love.

This first card introduced them to my family and why the ACA has ben a life saver for us. Literally a life saver.

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In Indiana you can call:

Senator Joe Donnelly (202)224-4814

Senator Todd Young (202)224-5623

IN District 6 — Rep Luke Messer (202)225-3021

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What I’m reading: Essentialism (by G McKeown), Freedom of Information Act paperwork

What I’m listening to: Harry Potter #1 (yes, again)

What I’m watching: Timeless, The Two Towers

What I’m smelling: mud, wet puppy, and African violets

What I’m pondering: relationships, truth, honesty, respect

In my house: a new infinity scarf in a lovely dark grey wool still taking shape, good German chocolate, and chocolate covered almonds back in rotation.

Women’s Rally

Why I march . . . “What does the Lord require of you, but to do justice, love mercy, and walk humbly with your God.” Micah 6:8

I march because I love myself, my sisters, my mother, my aunts, and my daughter . . . and all my “Sisters” around the globe

I march because I love our Planet Earth . . . all her waters, all her mountains, all her woods, all her plains.

I march because all people deserve respect and dignity . . . all people.

I march because to be silent is to be complicit.  I march because that is too high a price to pay.
img_3342img_3345img_3366img_3368img_3392img_3393January 21, 2017 :: Downtown Louisville, KY

it wasn’t in a movie

A section of Meryl Streep’s Golden Globes speech from last night. I didn’t watch the show, but this was in my NYT daily email.

There was one performance this year that stunned me. It sank its hooks in my heart. Not because it was good. There was nothing good about it. But it was effective and it did its job. It made its intended audience laugh and show their teeth. It was that moment when the person asking to sit in the most respected seat in our country imitated a disabled reporter, someone he outranked in privilege, power, and the capacity to fight back. It kind of broke my heart when I saw it. I still can’t get it out of my head because it wasn’t in a movie. It was real life.

And this instinct to humiliate, when it’s modeled by someone in the public platform, by someone powerful, it filters down into everybody’s life, because it kind of gives permission for other people to do the same thing. Disrespect invites disrespect. Violence incites violence. When the powerful use their position to bully others, we all lose.

For those who question the legitimacy of her statement:

http://www.snopes.com/2016/07/28/donald-trump-criticized-for-mocking-disabled-reporter/

http://www.cnn.com/videos/tv/2015/11/26/donald-trump-mocks-reporter-with-disability-berman-sot-ac.cnn

And there are plenty of other videos out there of the event.  Google is your fact checking friend.

I know that her statement wasn’t specifically about my next bit, but he’s also on the record making terrifically uninformed statements about Autism . . .

As a parent of an adult with Asperger’s, which is an Autism Spectrum Disorder, I’ve watched the world react to my son:  first as a child, then as a teen, and now as an adult.  I’ve felt the sting of rejection for him.  I’ve attempted to explain people and their prejudice. I’ve worked my butt off so that he can appear confident and high-functioning.

And that’s the thing:  he does appear “normal” to a lot of people.  I’m always hearing, “He seems so normal.”  Well, yes and thank you (I think), but you don’t see the years of practicing, the years of getting it wrong, the years of training, the years of therapy (often for me!). You don’t see the heartbreak when it goes wrong.  You don’t see the months it can take to regain equilibrium.  You probably haven’t wept at night worrying about how the harsh world is going to treat your adult child.

But maybe you have.  Maybe you parent an adult with #ASD.  Maybe you parent an adult who doesn’t fit our binary gender traditions.  Maybe you parent an adult with a mental illness.  Maybe you parent and adult with a chromosomal defect.  Maybe you parent an adult with a physical disability.  Maybe . . .

Donald Trump on Autism:  https://twitter.com/realdonaldtrump/status/449525268529815552?lang=en

http://www.sciencemag.org/news/2016/11/trump-met-prominent-anti-vaccine-activists-during-campaign

http://mediamatters.org/research/2015/10/09/donald-trump-says-america-would-have-common-sen/206066

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What I’m reading:  Clouds of Witness (by D Sayers).  Essentialism (by G McKeown)

What I’m listening to:  Watership Down (By R Adams)

What I’m watching:  Rosemary & Thyme (BBC — and my favorite)

What I’m pondering:  A truly fantastic homily by Don

In my house:  lots of laundry by the wood stove.  lots of dishes waiting by the sink.  lists for  Spring/Summer/Fall yard work including seed lists and material lists for building seriously raised beds this Spring.

2017–starting anew

Our brains have always outraced our hearts. Our science charges ahead, but our souls lag behind. Let’s start anew.

Lee Adama: Battlestar Galactica

This isn’t the first time I’ve used this quote on the blog. It always comes to mind when I’m feeling frayed around the edges; when things haven’t turned out the way I expected; when I sense change. There is a lot of that in the air right now.

  1.  This blog is getting repurposed–again, but isn’t that the nature of a blog written solely to chronicle what this family is up to.  We are not a static set of people and so the blog is ever evolving.  I was surprised to see how happy it made me to remove posts from the blog. The blog will continue to focus on a few areas:  gardening, living simply, living lightly, and family memories.
  2. There is much work to be done on the environmental front, both personally and collectively.  I’m devoting my letter writing and phone call making energy toward this front.  There are so many issues that need attention, but this is a place where I’ve been active for 20 years.  Along with letter writing and phone calls, I’ll be working on a project that Hannah and Kelly have encouraged me to pursue.
  3. Project 2 is republishing some of my Asperger’s essays in a new format.  I wrote nearly 60,000 words on parenting a child/adult with Asperger’s.  People have been looking for those posts, but I didn’t want to keep a separate blog going just for that.  A great deal of writing is coming from the “Aspies”themselves, and I want to encourage that, but I’m hearing that our story — successes, failures — is helpful to those just starting the journey.
  4. I’m stepping back from health coaching and mentoring moms with kids on the Spectrum.  There is so much new science, so many new therapies, and so many new ways to plug into the support system. I don’t have the energy to stay current on all the research and since Michael is an adult most of the therapies are not going to be applicable to him.