Monthly Archives: January 2017

Life

@SenToddYoung — Let’s be so pro-life that we include feeding, sheltering, healthcare, and education for all children.

oil :: fracking

Keep it in the ground and keep our water pure, our crust stable, and our future bright #frackingfriday

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

plans: doing something

duckling

You know that feeling you get when you’ve done everything you can and you must simply float along waiting for the next step? Yeah, that’s me this week. I’ve made my calls for the week and I’m resting up.

I’m sorry to say, but not shocked, that only one of my elected representatives voted in a manner that helps our family this week. Senator Joe Donnelly voted to keep the ACA in place. He has my gratitude, my respect, and my support. Senator Todd Young’s office was aggressive and borderline rude on the phone. Representative Luke Messer’s office was quite pleasant, but ultimately he chose to toe the party line.

So while I wait to find out how badly this will hurt us (along with an estimated 18 million people) the first year, I’m doing some more planning. Not garden and budget type planning, but more activism planning.

  •  I joined a local activism group so I can stay informed.
  • I’m attending a prayer vigil instead of partaking in any inauguration event.  This is being held at St. Paul’s Episcopal Church in Jeffersonville.  Taize service and a meal with others — just what I need to keep me from grief and anger.
  • I’m marching in a Women’s March on Saturday the 21st.
  • I’m signing up for a charity 5K every month starting in April.
  • I’m reading books that are outside my comfort zone.
  • I’ve put making calls and writing letters into my calendar so that I don’t lose heart and give up.
  • I’m practicing radical self-care so that I have the strength to survive the next 4 years.
  • I signed up for text alerts with daily action steps:  228466

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:  Clouds of Witness (by D Sayers).  Essentialism (by G McKeown),

What I’m listening to:  Watership Down (by R Adams, audiobook)

What I’m watching:  Timeless, The Fellowship of the Rings

What I’m smelling:  Ayurveda Herb shampoo bar, peppermint soap

What I’m pondering: New mattresses, heavens there are tons of good options now.

In my house:  a new infinity scarf in a lovely dark grey wool taking shape, tuna salad and lightly salted chips, a startling lack of chocolate, and detox tea.

 

hope: seeds & garden

It is January in Indiana and I have seed catalogs spread out all over the table…because that is what desperate people do in Winter, we look forward to Spring.  Seed catalogs are a symbol of hope for me and I need all the hope I can get.

I had thought that we would take this year off from gardening. I had thought maybe I could travel to see family.  I thought maybe a vacation would be nice.  But the fates have conspired against me.  So not only will we be gardening, we’re going to have to go big again.

The reasons are mainly economic — if the Congress overturns the ACA (Affordable Care Act), then our son will most likely be without insurance. I spent months searching for insurance when it began to look like the Republican Party might get control of Congress.  Then I hit a period of frantically making phone calls when I thought that DJT might really become president. I knew that one of the big promises was to repeal and replace the ACA.  The problem with the plan is . . . they don’t have a plan.  “Let’s repeal it now and we’ll worry about replacing it later” is not a plan.

I had a someone tell me in November, “You’re getting your exercise jumping to conclusions.”  She was convinced that I was worried for nothing.  Everything is going to be fine.  Right.  So I’ve stayed quiet and stayed off Facebook because it hurt.  I’ll be honest, it really hurt that she would belittle my feelings and my knowledge of the world with autism.

If anyone thinks that perhaps it isn’t all that bad, I invite you to contact insurance companies, tell them you are a 28 year old male with autism and ask what kind of plans are available to you.  The answer 9 times out of 10 is “We don’t cover people with autism.”  The 10th answer is a premium so high it would take half your family income each month.

I’ve spoken with other families that have declared their adult with autism as a legal dependent. They have confirmed that in the case of autism it will remove his right to make most decisions (medical, financial, marital)  It’s expensive to do.  It’s expensive to un-do.  I’m laying it all out here: I do not want to ever say that I gave up on Michael’s potential to be independent. It’s breaking my heart to even consider this option. The alternative is simply to hope he never gets sick, never gets hurt. I’m actually much more comfortable with option 2.

Since Congress and the President-Elect don’t have a plan, I’ll have to come up with one:

1. I’m back to gardening plans and seed catalogs . . .

2. I continue to hope that common sense and compassion have a place in this new administration.

3.  And I’m going to ask you all to do something you may not agree with, but I’m asking anyway.  Congress is moving very quickly to repeal the ACA (Affordable Care Act).  They have no plan in place to help those who depend on it to get insurance.  I’m asking you to call your Senators and Representatives.  Ask them to simply slow down.  Ask them if they would want their children’s (or grandchildrens) medical care to dependent on Medicaid or to have to go without basic care. Tell them about Michael.  Share your concern.

In Indiana you can call:

Senator Joe Donnelly (202)224-4814

Senator Todd Young (202)224-5623

 

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

What I’m listening to:  Watership Down (by R Adams, audiobook), Aaptiv (iPhone fitness app that is rocking my world right now)

What I’m watching:  The Perks of Being a Wallflower

What I’m smelling:  Ayurveda Herb shampoo bar, soup bubbling in the crockpot

What I’m pondering: If I should learn to knit with multiple colors.  I typically stick to a single color or perhaps 2, but I’ve never done anything elaborate with color.  Advice?                        ,Also the logistics of making 3 foot tall raised beds.

In my house:  Laundry in front of a fan, overcast skies, trees bending in the wind, the last of the Goldenrod stems falling into the grass around them.

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.