Monday, March 26, 2012

Wills and trusts

Last week, Erik and I visited our new lawyer to start work on getting a special needs trust set up for Soren. We need a way to ensure he'll have the funds to live well when one or both of us are gone, as well as when he's aged out of our insurance as an adult. (Small soapbox here, but our government and communities FAIL at providing for autistic adults. I'm learning that there's no one agency that coordinates care, and you have to prove poverty to get any--crappy--benefits.)

The lawyer had a nice perspective (he must do this with parents a lot): hope for the best, but plan for the worst.

Erik and I had completely different reactions to the session. He thought it was reassuring to have a concrete arrangement and an action plan. I thought it was terribly depressing to face some really scary future events. The thought of our little (and eventually big) guy navigating this world without us is just too much to bear right now. I found myself dissociating from the discussion, thinking only in really abstract terms so I wouldn't focus on these being decisions about Soren's real life.

I suppose all discussions of wills and insurance involve this kind of thinking. It is always a what-if scenario. Maybe everyone dissociates from the details a bit. I am glad that we have started to put safety nets in place for Soren. But boy do I wish that we were funding his college education or post-graduation European bash instead of his daily living for the rest of his life.

I'd love to hear your perspective: How do you plan wisely for the really unpleasant future events without getting mired in them?

Sunday, March 25, 2012

Interwebs goodness

Here are a few things that have caught my eye lately:
  • This book was a little self-treat. Beautiful photographs and amazing stories of women who couldn't help but travel. I loved the recurring images of women in long skirts going into the boonies.

  • Patton Oswald's Twitter feed for a laugh or a jab. As a warning to my mother, it's a bit raunchy.
  • My hubby's new blog!
  • Sycamore Street Press's letterpress shop on Etsy. I'm definitely getting this one for Soren's room (more on this issue in a future blog post):
  • The food blog 101 Cookbooks. Everything she makes is golden, and I wish I could photograph anything as well as she photographs food.
  • Peeps crafts. Don't miss the Seattle Times annual gallery of peeps dioramas. (By the way, I'm hosting sister Molly's upcoming twin baby shower, and the theme will be Peeps. I'm so glad I have the excuse to buy a bunch of them!)
I hope your weekend has been as relaxing and sunny as ours has been here in Seattle.

Tuesday, March 20, 2012

My Erik

Erik and I celebrated our 17th anniversary this year. Having a child--a special-needs child in particular--means I've gotten to know him in a whole new way. He truly is the yin to my yang, and together we are balanced. Here are some things he's taught me, in no particular order:
  • Autism makes Soren who he is (still working on this one).
  • Who cares what others think? (also still working on this one) and its corollary, Says who?
  • Films can speak for us when we don't have the words for what we're feeling.
  • The idea of opportunity cost (Econ major, natch).
  • The nonsense of martyrdom.
  • Spouses can and maybe SHOULD parent differently (wrestling, anyone?).
  • It's really not that hard to put one's shoes away. (I think I got it now!)
  • Amazon Prime is the best deal ever if you buy enough crap on Amazon (and boy, we do).
  • The difference between Wednesday night wine and Saturday night wine (tough lesson, that one).
  • Optimism. 
I could not be on this parenting journey without him. He lightens every load and makes everything seem possible. Soren and I are so lucky.

Friday, March 16, 2012

Wee places

Our boy loves to get his little body into even littler places. We think it makes him feel safe to have so much tactile input. I'm just glad someone is using the laundry baskets around here.

Tuesday, March 13, 2012

A tragedy, a response, and a promise to you

A news story is haunting me. If you're an autism parent, you probably already know what I'm referring to. If you're not an autism parent, you probably don't. If you haven't read the account, please do so.

A twenty-two-year-old man with autism. An exhausted and desperate mom. And a murder-suicide.

The headline is sensational. The story, as much as we know, is horrifying. And it makes those of us with kids who are younger terrified. We're grappling with the day-to-day struggles like choosing among therapies, finding peer play dates, grappling with a complex school system, and finding a place for our grief. But in the back of our minds, the really big fears loom: puberty and its hormones, our kids aging out of school and its daily routine, eventual aging and death of parents, funding care for the rest of our kids' lives.

The bottom-line fear as I read this story is: Could this mom's story be mine?

What gave me a little perspective was the response by Mama Be Good's Brenda in her post Don't Do This Alone.

She writes:
Don't try to solve your fears alone.
Before you ever get to that place where you say, "I'm so tired.  I can't do this anymore," go find someone.  Even if you say to yourself, I should be able to solve this on my own.  Even if you think, I don't want to burden anyone else.  Find someone and talk it out.
Maybe that someone won't have the answer to your problem.  Maybe they know someone who does.  Or maybe the next person will.  Alone we are mediocre problem-solvers.  We don't support ourselves well.  Together, we have a mindstorm of ideas and stories and people.
I don't want to minimize the fact that this mother killed her son. It's not excusable. Period. But I do see this story as a call to action to all of us parents, with special needs kids or not. Some things are too big to resolve on our own. There is too much pain, too many decisions, too much grief, and too much exhaustion. The only way to make it in this journey is to get real, starting with letting someone know if we are approaching our limit.

Here's what I can promise you:

1. I will let two people know if ever I feel those walls closing in on me. I will let someone know the severity of my pain right away.

2. I will continue to develop a tribe of friends, family, and peers on this special needs journey with whom I feel comfortable--comfortable enough to ask the big things, like watching my son while I get fresh air, coming over just to be with me while I cry in the other room, and especially getting together for mutual venting over wine.

2. I will ask my friends who are special needs parents how they REALLY are on a regular basis. No, I will ask ALL my friends and family how they REALLY are. I will share my list of caregivers, therapists, counselors, pastors--any resources I have--if they ask, and, perhaps more importantly, even if they don't but I sense they need it.

3. I will jump in with action, not just questions, when I sense it is needed. I will err on the side of action and worry about offending later.

As I think about this list, I'm struck with how much it applies not just to special needs parenting, but also to those with depression, postpartum depression, hushed-up life tragedies, and parenting in general. We've got to make our living a communal one. We have to share when we are not doing okay. And we have to make NOT feeling okay less shameful. The deep connections are what make us feel less alone.

What will you promise today?

Monday, March 5, 2012


It's time for nail cutting in our house. That means a two-parent wrestling pin, if you're wondering. But I'm pretty ecstatic about the upcoming struggle. You see, for at least a year, Soren's been biting his nails, down to bloody at times. It got worse this fall, when his anxiety peaked: when he sobbed (the ugly cry, as Oprah would say) all the way through school, every day, and then to and from all appointments. He couldn't tell us what was wrong, and he frequently wept for an hour at bedtime. It was awful for all of us. Can you imagine what hell that must have been for him?

But thanks to medicine and maybe that two-week vacation in December that took us away from our routines, the anxiety is all but gone. And we are left with embarrassingly long and sharp nails. And I love them to bits.

Friday, March 2, 2012


Once the realization is accepted that even between the closest human beings infinite distances continue to exist, a wonderful living side by side can grow up, if they succeed in loving the distance between them which makes it possible for each to see the other whole against the sky.

 --Rainer Maria Rilke, Letters

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