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

 

<><><>

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

 

<><><><>

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

<><><><

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.

 

 

 

 

 

10 years

I’ve been blogging here since very early 2007. This blog had grown to such a huge monster that I left it for a time before coming back. Now as the new year starts, I decided to clean house. I kept a few posts from years gone by, but deleted a great quantity of posts (over 700!)

What’s left is a good sampling of what was important in past years along with family photos and memories.

Going forward this blog will become more curated . . . meaning I will keep the best and delete the rest. 2016 posts will remain up until the same month in 2017, then I’ll sort through and decide what to keep and what to let go of. In some respects this is the exact way I handle my journals. I burn them in a “ritual” each year on New Year’s Eve.

Christmas 2016

image

 My favorite two images from this Christmas:  Michael reading by the new tree and an old wreath given new life by the addition of tiny LED lights run off batteries.

image

Capsule Wardrobe

It was time for a major closet clean up. The season has definitely changed from late Autumn to early Winter (despite the date on the calendar). I’m not someone who normally pays a lot of attention to clothes/wardrobes, but I decided a bit ago to make a better attempt at looking put together.

Step 1:  empty the entire closet onto my bed and chair. Jasper was not terribly happy about the occasion, but once the gloves came out of a tote, he decided it wasn’t so bad after all.

image

Step 2: Try everything on: check fit, check colors, check condition. I’ve streamlined my wardrobe to a simple palette of colors that look good on me.  They happen to be earth tones.  I took a screen shot of the colors and keep it on my phone.  The idea is that I can check any purchase against the colors and know if it will match what I already have at home.

image

Step 3: Put everything that doesn’t fit or doesn’t match into the Goodwill bin. Put all the warm weather clothes into the totes. Find places for all the winter clothing in my closet. I ended up with a capsule wardrobe of 5 jeans, 1 dress pants, 2 skirts, 3 cardigans, 3 sweaters (tunics), black boots, brown boots, brown shoes, and trainers, down puffer coat (with hat, scarf, and gloves), down vest, super heavy winter storm coat, and snow boots. My base wardrobe of t-shirts, turtlenecks, Henley sweatshirts (2), flannel shirts (1), yoga clothes, PJs, and unders/socks all fit very nicely and I love knowing it all matches.

image

In the end I decided cleaning my closet was cheaper than therapy and got me pretty much the same results. It also made packing for my trip to Florida a breeze and when I returned home there was an empty tote just waiting for my travel bag and travel accessories.

I ended up with a good size box of sweaters and sweatshirts to send to Standing Rock plus a few extra shirts and sweaters for the nursing home.