Priorities

On my To Do List for at least two years, has been Call Attorney Re: Special Needs Trust and Guardianship. I moved that sucker from list to list to list never once picking up the phone. Didn't want to open Pandora's box, didn't want to start the ball rolling, not knowing just where it would roll, didn't want to do it, period.

Finally, the pain of not doing it, became worse than the pain of doing it, and so I made the call. STM and I met with the attorney on Friday, and let me just say this about that: I had the best sleep that night that I've had in years. 

I know the issue of guardianship can be controversial - declaring your child incompetent is not something we take likely. Who wants to declare that? Who doesn't want their child to achieve independence, to be able to make good adult choices on their own? We all want that, but not all our children are really headed that way, anytime soon anyway.

To us, the question came down to this: Does Wil want and need us to keep doing what we're doing, after he's 18? Yes.

The attorney was trying to get a general sense of Wil by our description, so he could guide us and answer our questions. I should have just showed him this picture, as it's a common sight in our house. Wil often gives me his "son," Elmo, to watch while he's at school - tells me when Elmo needs to take a nap, what he needs to learn from me as he's homeschooled, and when he might want a snack. Sometimes he's worried I will forget the ever-important snack, so he provides one for Elmo, himself.

On Sunday the family gathered to honor the one-year mark since STM's father's passing. We met at the cemetery, said a few words, then gathered back at STM's family home to eat Snickers ice cream bars, and toast a man we all loved and miss. As brief as it really was, we were all exhausted when it was over - grief is an ass-kicker. In the car, STM asked, "What's everyone going to be doing when we get home? I will be watching football."

"N-A-P-P-I-N-G!" I answered.

Wil piped up from the back seat, "K-I-S-S-I-N-G  E-L-M-O!"

While he may be "incompetent" when it comes to making his own health care or financial decisions, while he needs help brushing his teeth and putting on a belt, while he cannot prepare even the simplest meals for himself or use both a knife and fork, he is quite competent in his endless ability to demonstrate and teach how to love.

Where to Start?

My life is so exciting, I hardly know where to start. Should I start by telling you that I finally got those stubborn stains off the toilet bowl, using a pumice stone? That the "stone" was $3.00, it took about 2-3 minutes per toilet, and I'm as happy as a clam every time I take a glance at the pristine, white bowls?

Should I start by telling you that I have five special-needs-related meetings this week and I'm grumpy about each and every one of them?

Should I start by telling you that I am tired of the educating, the advocating, the planning, and the getting of ducks in their nice, little rows?

Should I start by telling you that I think I found a paint color for the living room? That after six tries at one paint store, I went into a whole different one, bought the fan deck, picked a color in about 2 seconds, and it's perfect? Should I tell you its name is "Essential Gray?" Essential. That is what that color is to me. I need to make that room neutral and calming. I need it, badly. That being said, our grand plan (which is going to take 5 years to implement at the rate we're going) is to have bright, bold art and upholstery. We want chairs in one bright, print fabric and the couch in a contrasting bright, print fabric.

Should I start by telling you that I am actually looking forward to getting back into my basement and chucking 50% of the stuff still left in there? I am so over it. I watched two episodes of "Hoarders" recently, and that cured me. One of the women featured said the most interesting thing, "I buy the stuff because I think, If I have that, my family will come over for Thanksgiving. That will be nice to use when they're here. I finally realized that the stuff was the problem, not the solution." That disconnect astounds me. Having buried a father who died with at least 50 used styrofoam coffee cups he was "saving," I am well aware that I could go either way on this one. They do say there's a genetic link.

Should I start by telling you that I broke my No-More-Netflix rule and watched an episode recently of "Call the Midwife," and I love it, and there are many more episodes in my future?

I think I should start by telling you that it's officially time to wrap this post up, and commence with Beer O'Clock.

Cheers.

Autism in Love

Do yourself a favor and spend 4:27 watching this poignant film about autism and relationships. It's the perfect length film, because any longer and I would have been beside myself - this issue is so close to home. Wil mentions daily, if not several times a day, his plans to marry and have kids (triplets, don't forget!).

Just like the mother in the film says, and I'm paraphrasing, I don't know if my son can get married, but I don't want anyone telling me he can't. I need to believe it's possible. In fact, I need to believe that all of his dreams are possible.

Top 10 Ways to Drive Yourself Stark Raving Mad Picking Paint Colors

10.  Don't buy a fan deck

9. Bring home 10 different swatches and get 10 different opinions

8. Go back to store and select 3 colors, paint them in three different places

7. Hate all 3

6. Repeat

5. Have everyone that walks in the door tell you which one they like best and why

4. Try to please each of these people

3. Pick a color you love, then pick carpet

2. Decide the color you love, does not work with the carpet

1. Repeat until you relent and buy a fan deck

Please join me over at Hopeful Parents today. Thank you!

The Reason I Jump

I had been hearing about this book, and this amazing human, Naoki Higashida, and "jumped" right on ordering it from my local independent book seller (Julie Wallace at Wallace Books - go there!). However, I found that I didn't jump right on actually reading it. It sat in the pile taunting me. The last thing I want to do after finally climbing into bed, is read about autism. So, I did the opposite. I got up early for a few days (not many, it's a quick read), had my coffee, and read the book as a meditation.

I highly recommend this beautiful book to anyone and everyone. It's written in a Q&A format, and Naoki answers many of the questions associated with autism, at least as they apply to him. Wil doesn't have classic autism, but there was enough of what Naoki said that clicked for me, and I realized he put to words what I have felt in my soul.

One such example is, "Why do you memorize train timetables and calendars?" His answer was because it's fun! He loves the simplicity, clearness and unchanging nature of numbers. They are fixed. They are predictable. Much of an autistic's life is spent managing anxiety, much of their behavior we consider "weird" is their efforts to do just that.

He was asked about free time, and his response was that for many autistics, free time is un-free time. What they spend their time doing is not so much what they want to be doing, as what they can do.

When visiting a Japanese town he came across a giant Buddha, and was moved to tears. "... it was the sheer weight of history and generations of people's hopes, prayers and thoughts that broke over me, and I couldn't stop myself crying. It was if Buddha himself was saying to me, 'All human beings have their hardships to bear, so never swerve away from the path you're on.'" He wants people to know that not all crying is sadness and meltdowns, or being upset, that people with autism can be moved.

But my favorite thing he says is the answer to this question: What are your thoughts on autism itself?

"I think that people with autism are born outside the regime of civilization. Sure, this is just my own made-up theory, but I think that, as a result of all the killings in the world and the selfish planet-wreaking that humanity has committed, a deep sense of crisis exists.

Autism has somehow arisen out of this. Although people with autism look like other people physically, we are in fact very different in many ways. We are more like travelers from the distant, distant past. And if, by our being here, we could help the people of the world remember what truly matters for the Earth, that would give us a quiet pleasure."

Amen.

15-Year Goals

Have you ever made 15-year goals? I've somehow managed to eek by all these years without goals of any specified length, but Wil has, indeed, 15-year goals, and they include:

1. Get married

2. Have children (one set of triplets)

3. Move to Anaheim (and live in the Castle at Disneyland)

4. Send my kids to day care


You love it, right? I know you do. I particularly love that he has his kids shipped off to day care as he enjoys some kid-free time in the Castle.

Hoarding

My mom and me at the Oregon State Capitol, 1965?

 Woohoo at 6, Rojo at 4*

On Thursday when I turned on the hot water, it came out scalding. In the shower I had to adjust the mixer knob thingy almost to cold, to keep myself from being burned to death. I asked STM to please adjust the temperature on the hot water tank, and he assured me he'd get right on it that evening.

Friday morning the "hot" wouldn't get past luke warm, so I very gently "suggested" STM re-adjust the hot water tank again, more to my liking. He confessed he'd forgotten to ever adjust it in the first place, and what was actually happening, was our ancient tank had gone tits up.

Not to worry, he had a guy come out and drain the old tank, and a new one was put into place. That was the easy part. What was hard about the whole thing was hauling all the crap away from the old tank, and making room for a new one to get dragged into a room with barely a breath of space between boxes of junk.

It was mortifying, actually, to have another living soul in our basement, a testament to our ways. "It's almost like hoarding down there," STM said.

"Care will get it," I answered.

To be perfectly clear, Care has "gotten" it any number of times in the past. The place fills up, Care clears it out, and somehow it mysteriously fills up again. For some reason, we're storing a bunch of stuff for someone I've only met once - a friend of Woohoo's. That's the easiest to identify and ship off to its rightful owner. Much of the other stuff is pretty cut and dry, too. Useless junk is useless junk. It's the sentimental stuff I can't part with, and by "sentimental" I mean teaching units I worked hard at creating, never mind that they haven't been used in over 14 years and are antiquated. I have a million pictures of every kid I ever taught. I rifled through a big stack of them today, and it was amazing how both their first and last names came back to me, even after 25 years.

I found old journals, brutal to read, yet I can't seem to toss them. I don't have all the kids' old toys and clothes, but I have their/my favorites. I have nearly all their books, and many from my own childhood, too. Heavy tote after heavy tote of books we never look at. What am I saving them for? Grandchildren? Am I going to open my own damn preschool?

I found three jigsaw puzzles that have never even been opened, and several that have only been put together once. Games, games and more games. VHS and DVDs. Will there ever be a point in time that we'll want to watch another Olsen Twins video on VHS? And if so, what's the matter with us?

Want to see printed drafts of a book I never published, and never will, so help me God? Got 'em!

How about components to old TVs and stereos we no longer own? Check!

Two million decorations for every holiday known to man? A few party hats and matching plates/napkins from birthdays gone by? Got all that, too!

The goal is to divide the hoarding mess in half, and be able to quickly find everything, should we ever "need" it. I'm guessing I have at least three carloads of stuff already, that needs to go to Goodwill, and I'm far from done.

I know that what I'll feel is relief, when the stuff is gone. I know I won't miss it. I know that when I go down there and can actually walk, I'll feel great - lighter, more able to breath, free of the past and all the stickiness that goes with it. Let me say it again - reading the old journals is so brutal, why would I put myself through ever having them around to read again, by me, and God forbid, someone else? I guess it's the hours and hours and hours that went into writing them that feels "wasted."

Woohoo is home for Fall Break and I made her go down there for two hours with me today. She made a nice dent in her own corner of the basement. All her old teeth that I so carefully kept for her? Gone in an instant. She was a little too quick to part with old photos, I'll have to save those for the next go-round in a few years. She was great about shedding a lot, though, and admitted, it's much easier to part with stuff you've acquired recently, than anything you've held onto for a long time.

And there it is, isn't? The longer we've held onto something, anything, an emotion, a grudge, a memory, a burden, a thing, a person, the harder it is to let go of.


* I pulled these pictures off of an old poster board from when Wil was in 1st grade and Star-of-the-Week

Care Will Get It

STM and I have had a joke for years, he would rip open a package of something, leave the remains on the counter and say, "Care will get it." Shoes. Socks. Dirty dishes, all things Care would get. Care being Care, would get them, too, because Care cannot stand for those things to just sit there, and STM counted on just that very thing.

Both kids have gone big with the Care-will-get-it way of life, and Woohoo has passed it on to her friends at college. When Woohoo, Noah and Marcie were at our house briefly on Friday before getting Wil, they made smoothies and left all the dishes/blender/etc. in the sink, with the following note:

Not sure just how much trouble three kids and two beers can get into, so I didn't get too worked up about the little PS.

Later this week Woohoo texted to say that Noah walked into the dorm kitchen and it was a mess, he said, "Care will get it." I'm sure whomever made the mess has a "Care" at home, too, that has picked up way too much after people that are way too capable of picking up after themselves. But it's hard to teach an old Care, new tricks.

Luxury Problems

Anne Lamott, in her marvelous book, HELP, THANKS, WOW talks about the how much time, effort and attention go to "fixing our toys." It's so true, and it's such a luxury problem to have that A) I have toys, and B) I have the time and wherewithal to either fix them, or arrange to have them fixed. That being said, it feels like that is all I really do anymore. It's enough to make me want to go off the grid, live in seclusion, away from the Internet and 3G, away from voicemail, email, text messaging, passwords and comment verifications, away from remote controls, alarms, reminders, alerts, DVRs, anything with a battery, cord, or button. I fantasize about holing up in a remote cabin with a fire, candles, a good (real, hold-in-your-hands) book, and a cozy blanket. I want only to hear the crackling of a fire, and not the buzz of technology.

I think the next up and coming professions will be those that help people break and/or recover from technology addiction/overload. Don't get me wrong, I love at as much as the next guy, I'm all over my Smart TV with the Netflix button on the remote. Next episode of "Scandal" ready and waiting for me at my command? Yes, please! I want to marry my iPhone. I adore text messagine. Emojis? Delightful. But when I walked with Kathleen this morning and we caught up on our weeks, all I could really report on mine were Comcast and Apple stories that I'm sure, bored her to tears.

I don't really know where I'm going with all this, other than to say technology is both a blessing and a curse, and on a continuum. To strike that perfect balance where it's working for us, not against us, where it's making our lives simpler, not more complicated, where it's connecting us in an authentic way, not inauthentic, manufactured, made-for-Facebook sound bites, that's the challenge.

The Marathon

Here we are oh, let's say, about mile 10? Not really sure, I just know it's when Kathleen's husband showed up, took our sweaty long-sleeved tops from us, and snapped our picture.

Her sweet husband, Jerry, showed up a total of FOUR times along the course, as well as chauffeured us back and forth to the race. I think this was the home stretch, mile 25. See how happy we were to be almost done?

The race was great, really great. The weather could not have been more perfect, and that's saying a lot. Just the week before it rained in sheets for days on end. Sunday it was dry, sunny, but not hot, and there was a little breeze.

That's Kathleen in the white, and her daughter, Michaela, in the orange. We were very happy she chose orange when we got there and were in our corals, trying to keep sight of each other. Also, during the first mile or two when everyone was bunched up and zig zagging all over the place.

The pink hats Kathleen and I wore say Love. As Wil would say, "Cute story." A few summers back, Kathleen and I were each in Cannon Beach, Oregon, at different times. We each walked into the same little store, saw those hats, and bought one for the other person for Christmas, months away. When we opened each other's gifts, it was a Gift of the Magi moment. We knew we had to wear the hats for the Marathon, so that Love. could be in every picture.

Jerry wasn't our only fan, STM, Wil and Flicka came out, we saw Woohoo's friend, Marcie, who was volunteering, friends from church found us three different times, liz, Tom and Nancy met us at mile 22 for hugs and high fives. It was a love fest.

I wish I'd photo documented some of the get-ups and the clever signs along the way. One couple had on black shorts, on her but were the letters SE on his were XY. Some of the signs said things such as, "You're running better than the government!" "Pain is temporary, but Internet results are forever!" "This seemed like a good idea 4 months ago!" "Your feet hurt because you're kicking so much ass!" "Sweat is liquid awesome!" "Toenails are for sissies!" There was formal entertainment, too, in fact, the whole event was so entertaining, the time went by quickly, all 5:37 of it.

We didn't break any records, but we were in the ballpark of our goal, we finished with pride, nobody got hurt, and we had a lot of fun!

College Visitation

The conversations started back in August, maybe even July. "Wil? Do you want to come and spend the night with me at college this year?"

"I will on October 4th," he answered, each time the question was asked, never once looking at a calendar. As we all know, October 4th landed on a Friday this year, and as luck would have it, Wil's high school football team had an away game (far away), so he was free.

Woohoo and Wil worked out the whole entire thing on their own, all I did was pack him a bag and leave it by the front door. Woohoo and two friends, Marcie and Noah, came and got his stuff, before they had a "wild" time at Trader Joe's, Safeway, Bi-Mart, and even the Franz Bakery Outlet (the apple doesn't fall far from the tree). Then the three wild ones drove out to Wil's school and picked him up when he was out.

Woohoo lives in a "coed" dorm, but really, it's a girls' dorm with a boys' dorm attached. They even have different names. Noah was one of Wil's student assistants his freshman year, and they've stayed in touch. Whenever we go visit Woohoo, we try also to see Noah. Woohoo explained it all to Wil that he would not be able to actually sleep in her room, but that Noah and his roommate had room and wanted him, and she'd be "right next door." He bought it. And when I told him he could skip showering, but not brushing his teeth, he was downright giddy.

Wil being Wil, rejected all spirit wear options from Woohoo's university I presented to him on Friday morning, and instead, wore a college T-shirt from a rival college. That's about right. I should have forbade him from wearing anything remotely in the color scheme of her college, and he would have been all decked out.

Woohoo, Wil, Noah, Marcie and a few others, had a great time. They went to dinner, they hung out in the different rooms, and at 8:30, Wil went to bed. Noah had an event he had to go to, but the sainted roommate put headphones on and stayed in the room with Wil, playing video games. Woohoo told Wil he could wake up whenever he wanted, but he couldn't be noisy until 8:00. He woke up at his usual 6:00 AM, and STM and I began getting texts. He quietly listened to music on his iPad until the roommates woke up, fortunately, they both had to be up early anyway. Woohoo took over, but the dining hall didn't open until 10:00, so thinking ahead, she had gotten extra "taco" from the commons the night before, and heated that up for him in the kitchen in the basement of her dorm, where he could be as noisy as he wanted to be.

When the commons did open, the gang all gathered there for the last hurrah, then she packed him all up neatly and efficiently, and brought him back home!

STM was banging around in the kitchen with a spring in his step, "I'm excited for the kids to come by," he said. I felt like I'd been picked up out of the present (and my fears of the future) and dropped into some alternate universe where we were happy empty nesters, excited for the kids to stop by.

I'm choosing to believe his words were more prophetic than just a case of him not really saying what he meant to say. Either way, the "kids came by" and it was fun. Then one of the kids left to go to her other home. Now, the next time someone asks Wil if he's visited any college, he can say, "Yes. I even had an overnight."