More Rumi

“Your task is not to seek for love, but merely to seek and find all the barriers 

within yourself  that you have built against it.” 

― Rumi

It's really true. I'm going through the fun, and sometimes crazy-making, process of coming up with a subtitle for my book. Believe it or not, it never occurred to me to have one, even though the first book I wrote, had one, all the other books on the planet have one, and I pretty much should have been thinking about this months ago. Nonetheless, I'm doing it now.

Words like "relentless," "embracing,"  "autism spectrum," and "grief." Have all (among others) been mixed and matched. Then my astute agent reminded me that the story is about, more than anything, the boy with a super-human ability to love. 

My posting will be spotty at best as I tie up loose ends of the book, and get a girl ready for college NEXT WEEK! 

Love, love and more love.

A Day at the Beach

For those of you that are faithful followers of the blog (THANK YOU), you know that each summer we take a day and drive to Seaside, Oregon to do exactly (and only exactly) what we do each and every other year. We go to the arcade, drop $40 in about 4 minutes, go to a salt-water taffy place and hand pick a bag's worth, have lunch at Pig-n-Pancake, hit the beach, build a sand TV, throw a ball around, complain about how cold/windy/whatever it is, make a big mess, clean it up, then go home.

We arrive home exhausted from our day at the beach, with a bunch of things to unpack, hose off, wipe and clean.

This year (yesterday) I only loaded $10 on each kid's card for the arcade. Rojo went straight to "the claw" where for 25 cents you can "play 'til you win" a pice of candy. The machine must not have been working properly, because 10 minutes in he still had $9.75 on the card. I didn't complain. When he had a whole sweatshirt pocket full of gross candy, he headed for the Big Bass Wheel. He swiped his card (actually, I helped him), pulled the handle down nonchalantly, then while being totally distracted trying to get a piece of candy from his pocket, he won 1,000 tickets. He was mildly impressed, the three of us were beside ourselves.

After waiting an eternity for the machine to punch out 1,000 tickets, we decided to break from our tradition of giving away the tickets, and instead, went to the redemption counter and squandered all 1,000 on mostly MORE gross candy (and a Frisbee for Flicka).

Because both kids still had a ton of money left on their cards, the four of us played basketball, skee ball, rode on motorcycles, and had a ball. We gathered up a bunch more tickets in the process, and decided we would then return to our tradition. We looked around for an unsuspecting family to whom we wanted to give the tickets. Soon as we spotted a dad following a four-year-old boy with Down Syndrome all around the arcade while his two daughters played, we looked no further. The dad was so excited he almost cried.

We were the big winners.

Then we headed for Pig-n-Pancake and ate both. Rojo had a side of fries (and a bottle of ketchup). Ate every last one of them. STM did something totally out of character, at lunch he suggested we also go out to dinner. He had a place in mind. As soon as Rojo was assured there would be French fries there, too, he was in.

Over for the salt-water taffy (because we didn't have enough candy), and that, too, was fun and easy. No crowd, they had all his favorite flavors, and I got out of there for less than $5.00.

Off to the beach and we had fun watching Flicka have fun with her new Frisbee. She hardly ever plays, and it was so cute to see her run, fetch, dive into the water, roll around in the sand and just be a dog.

After about three hours having fun on a pretty chilly day, we packed up and went to dinner. For the second time in one day, the four of us sat around a table and enjoyed food and conversation with one another. I don't think we've eaten out together two times in two years (or maybe more like 5).

On the way home everyone (but the driver) fell asleep, and we enjoyed a quiet, relaxing drive home, plus, since we'd eaten there we not only missed the rush hour traffic coming back, but everyone was full and ready for bed.

Success all the way around.

Intimate

I have a dear friend that lent me a book that is dear to her, WHEN WOMEN WERE BIRDS, by Terry Tempest Williams. This is the first TTW book I've read, as I am not one to enjoy reading about nature, much as I love experience it, I do not like reading about it. Sorry. This friend insisted I would enjoy this particular book, and so I read it.

Loved it.

Still didn't like the parts where she describes nature.

Loved the parts where she forayed into her own psyche, and even more interestingly, into the mysteries of her mother that died and bequeathed all her journals to her. They were blank. All of them. Her mother made a point of telling Terry she was leaving her her journals, but not a single one had writing in them. The rest of the book is Terry's attempt to come to terms with that and understand what the journals were and weren't. Fascinating.

What is also fascinating, is that my friend marked in the book lines that really struck her - passages, thoughts, ideas, perspectives. I got to know my friend in a way I hadn't before, and we've known each other for twelve years.

When we understand what matters to our loved ones, we understand them better. Thanks, Terry Tempest Williams, for helping me do just that.

A Sign, Pt. 2

Last night was the final night for camp, and they had a Friends and Family BBQ. One of Rojo's sainted teachers camp up with a friend to visit him, and camp. She and the friend had met at that camp when they both worked at it for a summer a few years ago. Rojo was not very nice to her when she got there, he was visibly tired, hungry, overwhelmed by some of the sounds and behaviors of the other campers, and just overall unpleasant.

He seemed less than enthusiastic that STM and I drove all the way there, giving us a very lukewarm reception. He didn't eat a bite of dinner, and Ruby said he had hardly eaten anything all week - relying almost entirely on the jumbo-sized tub of Goldfish I'd brought just in case. He hadn't gone swimming, hadn't showered until THURSDAY, and said he'd had a lot of trouble sleeping because two of the boys in his cabin were really loud at night.

I asked Ruby if there was any other place he could sleep, and apparently two campers had gone home so he moved into a different, quieter cabin, and slept much better.

I drove to pick him up today, and he was more animated than last night, but not by much. Slowly as we drove home and he checked important things (like frozen yogurt flavors and the weather forecast, as well as the exact time) on his recently returned cell phone he came more and more to life. I asked him how much he liked camp on a scale from 1-10, he said, "3."

We drove straight to the frozen yogurt place before even coming home and putting on cooler clothing, he didn't have his usual two bowls, only one, and still he was not quite himself. He went straight for the TV/iPad combination and relaxed for awhile, then he was all about riding his bike to visit friends, seeing if there were dogs at the park, and going to the Little Store to buy stuff all on his own. When I mentioned I had to walk up there later he said, "Just tell me what you need and I'll get it for you." HUGE! AND, he did! (Romaine lettuce.)

He called Kathleen to ask her if she'd heard the ice cream truck on her street, and when she asked him how camp was, he said, "Great!" And he said it as though he meant it!

As I drove up the mountain this morning with a huge pit in my stomach after the BBQ last night, I saw another sign in someone's yard: "God bless you." I recalled a pep talk I'd had earlier in the morning with Rojo's preschool teacher, and a pep text message(s) from a friend reminding me that sometimes just because something is hard, doesn't mean it isn't good, and doesn't mean we shouldn't do it. Rojo didn't love camp. He missed us, his favorite foods, routines, TV, dog, bike, friends. He was pushed way out of his comfort zone. He wasn't very gracious or happy about it some of the time. He was, and is, however, so, so blessed.

Deafening Silence

I feel like my right arm is missing with Rojo at camp, but in a good way - now. The first 24-hours were brutal. Neither STM nor I slept a wink (I don't think Flicka did, either). I had both phones by the bed and was on high alert waiting for them the ring. As we got through all the firsts: first dinner, first sleep, first wake-up, first breakfast, first shower, etc., I started to relax. Now I'm very relaxed (in terms of him), and just savoring the thump/hum/tap/yell/door slamming-free house.

Monday night I slept like a rock and had energy ALL day yesterday - amazing what a difference it makes having a morning where you can complete a thought/activity! Woohoo and I spent the whole day getting her ready for college - and I was patient and pleasant! Both! And we were wildly successful and got a whole lot of things checked off the To Do and To Buy lists! Love that!

Now I'm about to dive back into the manuscript and do my "last" (I keep saying that) go-through before converting it into e-reader format. I'm going to warn you now, the book is not perfect, but I love it all the more each time I read it. I laugh, I cry, I cringe, I have hope, and that's just me. I hope you will, too. Better, more diligent, more careful, more highly crafted writers abound, but this book has something to say and I am excited to put it out there to have it's voice.

love.

The Swimming Story

Some of you will remember that Rojo finally got into a body of water two years ago in Sisters, and that body of water was the "baby pool." He has not been in any body of water since. He has a good friend, J., with a pool at his house. This friend's pool was made for the friend. No deep end. Warm water. Just a great place to play, complete with a basketball hoop in the pool. J. has invited Rojo to swim no fewer than two thousand times over the years. No interest whatsoever.

We took J. to yogurt early last week, and when we dropped him off, his mother again invited Rojo to come swim sometime. She emphasized he could touch at all points in the pool, and that the water was warm, and nobody would splash him. He bit. Quick as you can say had-her-in-his-contact-list, he was texting poor J.'s mother to arrange the specifics.

It was "decided" (forced upon them) that we would come at 12:30 on Saturday. I mean to tell you that my boy walked down the steps into the pool like he'd done it a million times, and proceeded to spend the next TWO HOURS in total bliss. Could not get him out.

So, when he told camp that what would calm him down was "swimming," it was so ironic. 48-hours earlier swimming would have been a stressor, then suddenly it was a calming force.

Predictably unpredictable, that's the name of the game around here. I can't wait to see what he decides to love next.

A Sign

Just got home from taking Rojo to camp. Sleep away camp. Five full nights camp. Go ahead, take a moment and let that soak in.

We've been psyching him up for a full year, and not once has he said, "You know, I don't want to go to camp," or "I'm scared to go to camp," or "Why do I have to go to camp?" Today he was SO extra super duper hyper it was unbelievable. He kept talking about his counselor, "Steve Bennett," a name he dubbed him for no apparent reason. Because I thought the counselors slept in the room with the kids, I assumed the boys would have boys and the girls would have girls. He's been talking about his boy counselor that he's going to have for months.

So, of course, he got a girl. Turns out his cabin mates are all boys, but the counselors sleep OUTSIDE of the cabins, to make sure kids don't wake up and sleep walk/wander off/etc. Anyway, the counselor is his 1:1 for the whole time, and she could not be any sweeter. Ruby. Don't you love that name? Ruby is 23, has been married 5 years, has a 1-and-a-half-year-old and is pregnant with number two. She works and goes to college and this is something she's doing (just for 2 weeks) for college. She wants to work with people with disabilities when she graduates. Ruby was sent straight from heaven.

We have been talking about this camp and how it's for kids with disabilities - all kinds - and how everyone will have a counselor to themselves, and so will he. Still, I don't think he connects the dots and realizes he has a disability. They talk openly in his school about it, we talk openly with him and around him about it, yet still, I just don't think he thinks he does. His eyes were huge when we got there and in the parking lot parents were pulling out the wheel chairs. (So humbling.) There were kids with disabilities that were obvious and some that were not. Mostly boys, I think I only saw a couple of girls. As STM said when we left, "We have so much in common with all the parents there, yet no time to try to connect with them, because we're all busy doing what we have in common."

Most of the kids are repeat campers, I think Rojo might be one of the few that is there for the very first time, and perhaps the only one really away from home for the first time (besides grandparents' houses and his one night at Outdoor School three years ago, and a night at the liz's). When we went through the line of the Behaviorist, she noted that this was an awfully big deal, and asked what would comfort him if he got anxious. He said, "swimming," (that's a whole post for another time right there). Since swimming isn't really reasonable I suggested time with Elmo. Ruby said, "Oh, my son loves Elmo!" I forgive you for pointing out that your BABY loves Elmo, because I know you are still learning, Ruby, and you mean well, and you want my son to be happy, safe and comfortable, and that is all that really matters. But still.

We finished the long check-in process, answered questions the Speech Path had (he's giving Rojo a printed schedule each day so he will know what's going on), and the nurse, we unloaded all his stuff, found him a bunk, and said our goodbyes. He was being brave when we left but I could tell he was processing a lot.

I was processing more. STM and I drove straight to the closest pub for a beer and a burger before climbing back down the mountain. After checking my cell phone for the umpteenth time to make sure it would both vibrate and ring should they call, I looked up and there was a sign in someone's yard that simply said, "God provides."

Amen.

Life-Giving

Had a really short, but great conversation with a (much younger) friend of mine yesterday. She mentioned that she wanted to point something out to her husband, but that it would not be "life-giving," so she didn't. Quickly forgot the term but remembered the gist and couldn't shake it from my mind, so this morning I texted her to ask her what the term was, so I could burn it in my memory.

She said that in Engagement Encounter they learned many things, but two that have been most helpful is that everything you do/say in a marriage should be life-giving, and you should hold hands when having a disagreement. She said it's very hard to stay angry when you're holding hands. I feel that I'd be  up to the challenge, personally, but I do like the life-giving part.

Today STM and I hung the art that I picked up from being framed two-and-a-half weeks ago. I no longer have the brain capacity to calculate where to nail a hole if I want two paintings to hang side-by-side, and still remain exactly centered over the couch. WAY over my head. Side note: in our basement I once upon a time managed to hang SIX pieces of art, perfectly level and with equal distances between them, AND centered on a wall. I marvel at my former self every time I walk by them. Alas, that was many ice-cream-truck-talking-about summers ago.

Turns out STM had a bit of a struggle with it, too. You don't even want to know how many tries it took us to get it right, and how many holes are behind the paintings. We at one point really over shot our capacities by trying to find studs and nailing two holes per painting, and have it all match up. Not possible by these humans.

I will say this about that - throughout the challenge we were able to stay "life-giving" with one another. Who cares that we have one extra hook next to the paintings? Who needs perfection? Marriage is not perfect. Our house certainly isn't perfect, but we can have the goal of perfect love.

Say it With Me...

So, I told you how on Rojo's birthday we got the letter in the mail saying he qualified for disability services. What with it being his birthday and all, and really not in the mood to deal with it just then, I skimmed the letter, saw the part where he doesn't need to be re-evaluated again until age 22, and then put it away. I didn't read down at the bottom to see who the case manager was that was assigned to him.

Tuesday night I was out with Woohoo meeting her new roommate, and a call came in. "Restricted Number." I do not answer those. No sir, I do not. Tell me who you are if you want me to talk to you (and even then I probably wouldn't answer your call, what with the phone phobia and all). Got home and there was a message on my home voice mail. Finally listened to my cell message, and they were the same message - our case worker was calling and wanted to set up a time to come meet with Rojo.

Her name rang a bell, but I didn't recognize the voice really, so I thought, must just be someone with the same name - pretty common first and last name, it surely can't be her. Called her back the next morning and she said, "We know each other. I am the cantor at church. I know you come to 5:30 Saturday Mass and you sit on the right in the back. I am SO excited to have Rojo on my case load! I will walk you through the whole thing, tell you what to do and not do, etc."

Rojo ADORES this woman (although until last night we'd never actually met her, just worshipped her from afar). He sings for days whichever songs she leads each week at church. He mimics her gestures to perfection. He thinks she's all that and a little bit more.

We could NOT have been given a better case worker if we'd asked specifically for one. In fact, if I'd known at all that that's what she does, I would have killed myself trying to get her.

But I didn't know.

But Someone did.

No accidents.

I'm Not the Only One...

Just saying! To order your copy of this unbelievable book, go here.

College Angst

I think I'm nothing but excited for Woohoo and the fact she's about to leave for college in, gulp, a month from Saturday. My nightmares say otherwise. Night after night I'm in college. I'm in huge, rambling, weird and wrong dorm rooms. I'm 49 and living in a sorority with 60 teenagers. I can't find my classes, forgot to study for the final, forgot to go to class in the first place, etc.

I do, in the light of day, realize she is the one going to college, and this is not about me.

I'm glad she is going to college really close to home (really, really close). It helps, psychologically, to know that I'm right here if she needs anything. If anything, I'm afraid I've under-prepared her for life on her "own." In some ways, as a special needs sibling, she's had to fend for herself in ways her peers have not. In other ways, because I have to do everything for Rojo - literally, do his thinking for him, it's hard not to carry that over to Woohoo - doing for her things she could, and should, do for herself.

STM reminded me of something I know, but choose to forget: if I never let her fall, she'll never know how to get back up. She'll never know how to rely on herself. She'll never know that making mistakes, changing course, righting the ship, is all part of life - actually, it is life.

And so, in a few short weeks, she will be living life - ready or not, here she comes.

Come see me at Hopeful Parents today! Thanks!

And Happy it Was

Rojo had a really happy birthday. All his favorite people came to see him, and they gave him all his favorite things: money for the the ice cream truck, gift cards to frozen yogurt, junk food and college T-shirts. One family even made him a T-shirt (can't even imagine doing such a thing) with an ironed on letter on the front for his first name, and a "16" on the back. The shirt is florescent yellow and super cool. He wore it for two days straight and slept in it.

Somehow he got it in his head that now that he's 16, he can, and indeed should, say no to everything I ask him to do. He told me in no uncertain terms, "Now that I am 16 I can do whatever I want. I will say no to everything you ask me to do. I quickly cleared up the confusion. "Okay, when I'm 22 I will do whatever I want to do and say no to everything you ask me to do."

We'll cross that bridge when we come to it. It's funny, though, because this is the third time his 22nd birthday has come up in 24 hours. The first time was on his birthday when he went to get the mail to see if he had any birthday cards (he had two), and in there was also a letter from the Disability Services notifying him he qualifies (happy birthday!) until he's 22, and then he'll need to be re-evaluated. Apparently there is some government agency that believes it's possible in six years for him to suddenly be a fully independent adult.

Then today we took Rojo's friend to yogurt, and the friend said, "I'm going to take Rojo out drinking on his 21-er." I reminded the friend that he would still be 20 when Rojo turns 21. "Not a problem," he said, "I'll get fake ID for the night."

"I do not want to go out for a 21-er" Rojo piped in (he has no idea what a 21-er is) "I will go out for a 22-er."

There you have it.

Sweet Sixteen

My boy turns sixteen tomorrow, and no where on the planet is someone sweeter. This cute little thing has taken up so much of my heart and soul, I had to do a big remodel to make more room - fully outgrew the old set.

Before there was Elmo, there was Big Bird. Both were originally Woohoo's. Both became his and there was nothing you could do about it. Nothing at all, so we didn't even try.

Woohoo is about to go to college and just learned who her roommate will be. They have a lot in common and one big thing not in common. The roommate is an only child. Woohoo might as well be in the middle of 10. They'll get along great.

Woohoo is the first to say, "Just when you're about ready to kill him, he goes and says something so sweet you can't help but forgive him."

This boy came here to teach. He came here to teach patience. He came here to teach compassion. He came here to teach the shedding of the ego. He came here to teach life re-prioritization. He came here to teach love period.

And he's done so, sweetly.

Happy birthday, Rojo!

A Long Couple of Days

I would hardly call it a crisis, but the same day that blood showed up in Flicka's poop, Rojo lost his watch. Flicka will be fine, thanks to our friend and neighbor Greg, that did a house call, hauled her "sample" into work with him and had two prescriptions ready for me to pick up before 9:30 AM yesterday.

The watch, however, is a goner.

Rojo doesn't just like to wear a watch, he likes a very certain kind of watch. For years these were available at Target for $9.99, and there wasn't a problem. Only a couple of months ago his strap wore so threadbare it broke. Woohoo and her boyfriend were kind enough to alter their plans for the evening, and immediately high tailed it to Target before bedlam ensued.

No luck.

They came home with a watch, but not the watch.

Rojo wouldn't have anything to do with it. The next day after school we went from store to store to store, finally finding one at Walmart, making that my pilgrimage trip there, and basically a convert for no other reason than they put me out of my misery.

Last night the new watch broke in a different place - beyond repair. Woohoo AGAIN left the house in search of a watch. She went to Target, Walmart, Fred Meyers. Nothing. She was willing to give him her OWN watch, but he wouldn't take it.

I tried to be firm. I tried to strike deals. I tried to make him swear on a stack of Bibles that if we couldn't find the watch today, he'd agree to wear the one Woohoo bought him last time. The perfectly good one sitting in our kitchen drawer for just such emergencies.

He swore. And honest to God, I think he meant it. Nonetheless, we spent all afternoon looking at DIFFERENT Targets, Walmarts and the like, and still, no watch.

He is now convinced that we'll just keep trying, and in the mean time, he'll walk around with a big tan mark where the old watch used to be.

I don't want to keep trying. I want him to put on the flippin' watch and give it a rest already. If I have to hear one more word about the watch, in between questions about when the ice cream truck is coming, or what flavors of frozen yogurt they currently have in each different yogurt store in the metropolitan area (including Sherwood), I will lose what little is left of my mind.

Too

So I wrote a book. Not a book, actually, a bunch of pieces pre-blog. Didn't get very far with it, but now looking back, am surprised I even got one single publisher to consider it (before rejecting it). Wrote another book. This time landed me an agent. Love her. She loves me. She loved the book, and away we went - sure I was headed straight to Oprah's yellow couch and the New York Times Bestseller list.

Not so much.

Wrote another book - third time's the charm, right?

Agent went to town again. Lots of nice feedback. Loved the book. Loved me. Loved Rojo. Loved our story. Too spiritual. We exhausted mainstream presses and went to Plan B - spiritual imprints. Too Catholic for the Protestants. Too Christian for the Buddhists. Too something for everyone. Got so far as to have one editor love it, take it to he "pub board" and really fight for it, but in the end, it was just "too" for them.

Here's the deal. If I had written a work of fiction (and we considered at one point fictionalizing this), I could keep reinventing the story to be less "too" and more whatever it is that we thought might sell. But this is a true story. It's our story. To the best of my knowledge, ability and integrity, the story happened exactly as I write about it. There isn't a lot of wiggle room and I don't want to turn it inside out to make it anything other that what it is - a book of love.

After much soul searching we (my agent and I) have decided to self-publish it. She is going to help me, because she is that awesome, and believes in the story that much. I have lost all hopes and desires of being famous. I have dropped expectations that everyone I know will read it, help promote it, and it will   sell enough copies to ever recoup what I've put into it. I do, however, want to finish what I started, and put it out there for whomever "needs" to read it. When it's ready to go, you'll be the first to know.

Art

My dear and holy friend, Candace Primack is among other things, a fine artist. I recently bought four of her incredible pieces, two sets of companion pieces. The two above are "Love Your Neighbor" and "Do Unto Others." The two below are "Love Is" and "Blue Benediction." You can't see it here, but there is writing on the paintings, cool, powerful, spiritual words that bathe me when I read them.

You can't tell by looking, but the frames are really big. Candace helped me decide on mats, frames, size and where to hang them in my house. Goodbye framed posters with Target frames. Hello, ART. Dragged Nancy with me Monday to go pick up the finished pieces. "Welcome to adulthood," she said. At least three of them are going to go into the "sitting (on your *&^) room," with the recently re-slip-covered furniture. When everything is done in there I will take pictures and show you. I know you're dying to see where it all goes down.

Candace is a theologian who uses art to express what she believes about God. She prays over her pieces and lets the Divine come through. These photos don't do them justice. The Good pops from behind the UV protectant glass and museum matting. No telling what all is going to come from my future "can" time.

Keeping Your Marbles

When I was in college learning to be a teacher, one strategy for classroom management involved a glass jar on the teacher's desk, and when the class was being good, the teacher put a marble in the jar. When the class was acting up, the teacher silently removed a marble. When the jar got full, the class got a party.

Lately I've been thinking a lot about the term "losing your marbles" and my opinion that if you can only have one thing in this world, it sure as hell better be your mental health. I believe hell and heaven are states of mind, and that we are always moving along the continuum between one and the other, "happy" when we are at least in the middle, and at times experiencing both the pits of hell and the ecstasy of heaven.

I'm already driving STM and my dearest friends crazy with constant reminders to "put a marble in your jar" - make the choice that fills your mental health jar, not the one that takes a marble away. This is really just another expression for self care, but self care I'm afraid has a "selfish" connotation, even though we've come to know better than that, haven't we?

Kathleen and I had an interesting breakthrough recently when we discovered we had too narrowly defined self care. We thought it it wasn't manicures, pedicures, massages, doing a crossword puzzle, sitting in an over-sized chair with an iPad, etc., it wasn't self care. We had not deeply considered what would put the most marbles in our very individual jars.

We are each super programmed to save money at all costs - including the cost of our wellness. To break that "cheaper is better" thinking is a challenge, but we start by adding tiny marbles every time we choose "yes" to the online shipping choice that guarantees what we need will be here when we need it, rather than saving $5 and freaking out it won't.

Because I am a proud gold card carrying member of Starbucks, after 15 drinks they send me a card in the mail for a free one - any drink at all. I carried the last card in my purse for over a month, visiting Starbucks many times along the way, refusing to use it because I had it in my head that because the drink would be free, it needed to be fancy. I didn't once consider my usual tall cappuccino "enough." I finally realized how ridiculous I was being and sipped my free drink of choice with great delight.

What will you do today to help fill your marble jar?

America's Newest Citizen

Meet Sonam, America's newest citizen! Sonam and Kunga came up to Portland yesterday, and today Sonam took her oath and it's all official - see her flag? She and 52 other new Americans from 23 other countries, swore to uphold all that is good and right in this country. It was really moving!

Could my nephew BE any cuter? He knows it, too. Now his new thing is saying, out of the blue, "God bless you, Carrie," with a huge grin on his face. 

One of Sonam's biggest dreams is to travel to Tibet - her homeland, yet she's never been there. Now with her American passport and visa, she should be able to travel much more safely and not worry about detainment.

God bless you, Kunga. God bless you, Sonam. God bless you, America!

So

So, here's what you've missed since I've been absent from the blogosphere:

* Woohoo graduated.

* Before the Baccalaureate Mass STM and I took Woohoo out to dinner. This is what she wanted in lieu of a big party - dinner with both, and only, her two parents. Feeling like *&^% that this is far too seldom the case, we of course obliged. We had a nice time, gave her our gift, and toasted to her overall awesomeness. At one point in the evening she said something about how nice it was without Rojo tapping, singing, thumping his leg, interrupting, etc. STM said, "Oh, Rojo, you'll never know what he's done to us!"

Woohoo didn't miss a beat and said, "I wouldn't say to you, as much as I'd say for you. You aren't the same people you'd have been without him."

* She's clearly wise beyond her years, and so ready to have a life that isn't about him. Speaking of which...

* At the Baccalaureate Mass one of the salutatorians mentioned Rojo by name, and said the moment he won the Timber tickets and the whole school gave him a standing ovation, was the proudest moment for the school in all her four years.

* At least three times at the graduation something was said in one of the speeches, or during one of the award presentations, about the impact of the program Rojo is in, on the rest of the school. One of the boys that went WAAAAAYYY above and beyond (missed his Senior Skip Day to stay and help Rojo), got a special award. We nearly clapped our hands off for him, and later got a picture of him, his parents, his award, and Rojo.

* After the graduation, graduate after graduate came looking for Rojo to get a picture, a hug, a hand shake, a goodbye.

* One graduate had leis flown in from Hawaii for everyone in her family. And Rojo.

* There was an all-night party afterwards and I volunteered to help the first shift - 10:30 - 1:30. God love the people that came at 1:30 and relieved us.

* Woohoo came down with some flu bug right before the party, got picked up by STM at 5:00 AM on Sunday, and virtually slept for the next 48 hours.

* The next day was Father's Day and we had combined it with a graduation party for Woohoo. She missed the whole thing. Her "Congratulations, Woohoo" cake was delicious. We took a picture for her.

* Rojo will start his summer job of "working" at the same preschool he did last summer, on July 2nd. Until then, he is mine, mine, mine, and there is no end in sight of talking about the ice cream truck. Modern technology has only added to the frenzy. He now has friends positioned all over the neighborhood, poised and ready to respond the minute they hear the sounds. There is Face Time, texts, e-mails, phone calls, you-name-it, all in an effort to find the truck each and every day.

* He's now discovered Garage Band on his iPad and taps out songs to... say it with me... ice cream truck tunes!

* I had cataract surgery on Wednesday. The operation could NOT have taken more than 5-6 minutes. STM said he didn't spend 10 minutes total in the waiting room. Went great, and although there is some strobe-like thing going on now, I can already see better. I'm not even wearing my ill-fitting, very smudged, very cheap readers right now!

* Best thing about the surgery was the two days off I milked it for - the full day of, and the following day. Let's just say I am almost through Season 4 of "Private Practice," and leave it at that.

I am at Hopeful Parents today with an inspiring story of a friend's journey from tragedy to triumph!

Running errands around after I picked up Rojo from his last (1/2) day of school:

Me: Oh, darn, I forgot to get gas before I picked you up, now I'm low.

Him: Honey, you don't need gas, LOVE is all you need!

Normal

When Rojo and I met with his new developmental pediatrician (and she went through our story from the beginning), she asked a lot of questions about how things operate now for him, and for the family. I think she was trying to have the full picture in her head so she can advise us going forward, and I appreciate it. We aren't in crisis. I told her we weren't in crisis. I told her we used to be and now we're not, and really, we're just after staying the course we're on.

About every two minutes she said, "So, you've adapted..." or, "Wow, you've really adapted," or, "That's not a problem because you've adapted."

It's weird to watch someone reflect back to you your life as they see it, particularly an "expert." I would never have used the word "adapted" to describe what we've all done, but that's exactly what it is, we've adapted. Rojo has done his share of adapting, but by in large, STM, Woohoo, his family, friends and I, we've adapted. One might call it "giving up," but I am going to go big with adapted. Do the four of us ever go to a restaurant? No, we've "adapted." Do we ever go see a movie, or even sit around the flat screen together in our very own house? No, we've "adapted." There is very little about our lives that looks like everyone else we know, but we're so used to it now, it's our normal. Our at long last, adapted, accepted, at peace with, normal.

Eenie, Meenie, Miney, Massage

I have piles all over and around my desk. Each one is a stack of ick I care not to deal with, each one more depressing and off-putting than the next.

I straightened the piles. I got out my Post-its and made notes ON the piles. I put dates on my calendar of when things really needed to go down, in relation to the piles, but I didn't actually tackle the piles. It was more of a pre-tackle.

Then I asked myself, "Where is the trip to Tahiti pile?" There is no pile of fun going on.

Immediately sent an e-mail to my favorite person in the world, the massage therapist, Miho. Because there are no accidents, she e-mailed back within 5 minutes and could see me that very day for one hour of pure relaxation and self-care.

It might not be Tahiti, but it sure was Heaven.

Just Like in the Movies

Woohoo's and Rojo's high school had their equivalent of Field Day on Friday - a day spent having fun. Yummy food, fun activities, a time to be with all your friends and just goof around together. Both kids were really looking forward to it - Woohoo, because it was her last, and Rojo, because it was his first.

The school has had year-long fund raising efforts to help support their sister school in Kenya. On Friday they were raffling off four donated tickets to the Portland Timbers, to raise money for their favorite cause. I'd given each kid a few bucks to spend on food. Rojo used some of his to buy a bag of popcorn, and spent three dollars buying three raffle tickets.

At the end of the day there was an assembly, where various things took place, not the least of which was the drawing for the raffle. You guessed it, Rojo won. Out of 600 kids in the school, he won. That was great, but not the greatest part. The greatest part was what happened next - his name was called and the WHOLE ENTIRE SCHOOL spontaneously stood up, clapped, cheered, and chanted his name. And there were tears. Lots of tears. Lots and lots of happy, touched, thrilled, tears.

I had people coming up to me in the parking lot after school, calling, texting, e-mailing, stopping me when they saw me in the neighborhood - everyone had heard or was there.

It was a Hollywood ending. Sometimes things really do happen like in the movies.

What They Don't Know

After handing over two million pieces of paper to both the Department of Disabilities Services and the new developmental pediatrician, all of which painstakingly documents Rojo's weaknesses, I was once again struck by how little they actually know about my boy.

Do they know that he is funny?

Do they know that he is deeply spiritual?

Do they know that he can diffuse any stressful situation with just the right retort?

Do they know that he has endeared himself to hundreds of people?

Do they know that he knows everyone's name, how old they are, and what their interests are?

Do they know that if you tell him what's going on with you, he will follow up on that? "How was your surgery/trip/meeting/game?"

Do they know that if he is given a $20 gift card to the neighborhood market for his Confirmation, he will spend some of that money buying his mother a gift?

Rojo had been planning on what to spend his $20 on for weeks - over a month. Finally, on Saturday, he rode his bike up there, took a reusable bag in bright magenta, and executed his plan. He came home beaming from ear-to-ear. "Care, I spent $15.79. They crossed off $20.00 on the card and wrote, 'Balance: $4.21.' I bought a water bottle, licorice, Annie's fruit snacks, Goldfish, and something for YOU! Care, I bought you a present! Are you excited to see your present? Are you excited to see what I got you at the store?"

He reached in the magenta bag and pulled out a pint of half and half. "Care, this is for your coffee! I know you like to put cream in your coffee! I bought you a present! Do you love your present?"

STM walked in during all this, and seeing his excitement he asked, "Rojo, are you more excited about using your gift card to buy treats, or the present you bought Care with the gift card?"

We all know his answer.

On a Brighter Note

Got a good laugh yesterday when a friend of mine told me she'd taken her 8th grade daughter shopping for a graduation dress, and each dress the mother held up, the daughter said, "That's a Carrie Link dress."

Of course, she whole-heartedly rejected each "Carrie Link dress," but nonetheless, it's nice to know I have a look, and it is recognized, if not appreciated, by the 14-year-olds in my world.

I bring you an example of a "Carrie Link dress:" (And I do, in fact, own this very dress. Bought it to wear for Woohoo's graduation and a wedding I'm going to this summer. Just can't go wrong with a classic sheath!)

Right Between the Eyes

So, it's been quite a couple of weeks. Isn't it "funny" how the more you have to report, the less time you have to report it, and vice-versa? So, I went overnight from the girl with the over-sized chair, iPad and Netflix, to the girl in the midst of dealing with transitions on all fronts, and the harsh realities of them. Elderly parents and their rapidly changing needs. Graduating child and her changing needs. Planning for a special needs child to be a special needs adult. And in my free time, I've been preparing for my own cataract surgery, because nothing says Break from All the Hell like a good surgery.

Just this week I've taken reams and reams of paper and sat down with a brand new developmental pediatrician, and a county case worker, and gone through Rojo's history, from the beginning. Let me just say that one more time for giggles: from. the. beginning. I've had meetings about transitional services, I've learned new acronyms: PA, ID, PLEP, ILP, ISP, VR, DDS, SSI.

It's been brutal.

And it's been beautiful.

I've spent more time with my in-laws in the last 2 weeks than ever before. Daily, and sometimes all-day. I've been a first-hand witness to what a good 60-year marriage looks like - how two people that are more concerned for the other, than they are for themselves, is a testimony to all that's right with the world.

And the angels. Oh, boy, don't let me forget to tell you about the angels. Angels disguised as doctors, nurses, CNAs, orderlies, case workers, social workers, workshop leaders, PTs, OTs, speech therapists, roommates and the roommate's family, on an on the list goes.

Through each difficult day the angels have appeared, one after another and sometimes all at once. Whole hosts of angels.

The reality of my life and what the next few years, at least, are going to look like, is hitting me right between the eyes, and that reality is that there are good people in the world that want to help.

And do.

I am going to take a blogging break while I help with a loved one that is in the hospital. No need to worry, but your prayers are appreciated!

love.

Happy birthday to STM! Nothing says happy birthday like a post about IEPs! Come join me at Hopeful Parents!

Three Kinds of People

I used to think I wanted to be famous. I don't anymore. None-the-less, in my tiny corner of the world, I've become so. I can hardly step foot out of my house without someone spotting me and saying, "I loved your Letter to the Editor! Thanks for helping with the poop problem!" I put a letter in our neighborhood area paper and apparently everyone but the people I needed to read it, read it.

Yes, ladies and gentleman, I've become the poop police. For whatever reason (and believe me, I've given this WAY too much thought), in the last few months there have been an alarmingly high number of abandoned dog poop bags in our neighborhood. I don't get it - you walk your dog, you've bothered to bring a bag in the first place, you've scooped it up, turned the bag carefully inside out, tied a knot in the bag, and THEN you just put the bag somewhere else? You don't hold it until you find a garbage can or take it home with you? Really?

Really.

Recently I went on a 4-mile walk and found seven such bags. Without giving your TMI, let's just say they came from a wide variety of dogs. I finished my walk holding all seven bags and giving everyone something to talk about as I strolled through the neighborhood, laden with poop.

Favorite places to leave these bundles are next to signs, near fire hydrants, or in what appears to be obscure parts of other people's yards. Today I walked and saw a plastic bag with a note inside (I was all prepared to pick it up and throw it away, sure it was liter) and the note said: To Whom it May Concern: Please do not leave your dog's poop bag here."

Mind blowing.

My favorite was the New Seasons produce bag filled with poop and placed at the local grade school right next to a sign that said "School Zone." Obviously, a conscientious produce shopper. Obviously, not a conscientious neighbor.

Our friend Tom, in response to the problem, bought three garbage cans, cut holes in them, and placed signs on them that said, "Poop Can." He then chained the cans down in three strategic locations and has taken it upon himself to empty the cans and pay to have the garbage hauled away.

There seem to be three types of people in this world: Those that leave poop bags for someone else to pick up. Those that don't create a problem, and those that solve the problems created by others.

Seventeen and Counting

There are a thousand things to like about the new program Rojo is in. A thousand. Not the least of which is peer mentors. When we were exploring similar programs across the country, peer mentors was an aspect that especially appealed to us because of the obvious win:win.

As this year draws to a close, I want to make sure to thank all of Rojo's various peer mentors, homework helpers, lunchroom buddies, assistants, etc. Asked him to help me form a list and Woohoo chimed in - thought we got 'em all - thirteen. Decided as an added precaution to run the list by his teachers to make sure we didn't miss anyone. Indeed, we'd missed four. The boy has seventeen people that throughout the course of a week, assist him in some way. Seventeen. And that's not counting any of the teachers and staff.

He needs every last one of them.

And they need him.

As the teachers prepare for next year, they put it out to the incoming juniors and seniors that might have a free period to assist in the program. Twice as many applied as there are spots.

It feels good to help. For some of these kids they are used to school, learning, social situations, etc. being easy. For some, not so much. It is arguable which population of helper is most helped.

Win:win. What's not to love about that?

Good Bye

This is Dr. David Willis. You can also go ahead and call him our guru, our healer, our leader, our friend, our counselor, our behavioral/developmental pediatrician, our beloved. We got word this week that he is leaving his practice here in Portland and accepting a giant job in Washington D.C., where I am certain he will change the world. Fortunately, we had an appointment with him the day before the letters arrived in the mail. We were able to hug, cry, and tell him what he's meant to us all these years: everything.

His leaving is a huge loss to not just us, but hundreds, possibly thousands of people in this area. I spoke to his scheduler yesterday, she is receiving between 18-20 calls an hour from freaked out parents.

I have written about Dr. Willis before on my blogs, it is impossible to tell our story, without talking about him. In my most recent memoir, he is mentioned several times. The man is an angel and like all good angels, he fell into our laps. He came to us. There are no accidents and this was no exception, when we were completely upside down fourteen and a half years ago, he came to us.

It is important that I remember that Dr. Willis found us, Flicka found us, lots and lots of angels have found us and will continue to. There is no scarcity. There is nothing to fear.

But there are good byes.

Casper and Jasper

So, when Rojo turned 15 last July, we got him a cell phone. Said cell phone promptly got named, Casper, and became an appendage. Rojo was never without it except to sleep, where it then lay on the kitchen counter charging, so he'd have it bright and EARLY the next morning. We had to set up some rules, "Don't text ANYONE more than 5 times a day." (I believe Nancy holds the record at 62 texts in one day. Most of them the same text sent multiple times, as she had the audacity to be driving when he wanted her Right. That. Minute.) Another rule was, "No texting before 7:00 AM on the weekdays, and 8:00 AM on the weekends."

The point of him having a phone was to be able to reach him when he was over at the dog park, and for him to be able to reach us, should there be a problem. For the most part, he is excellent about responding to our calls and texts, but there have been times when he's had it on silent, "So nobody would bother him," thus, completely making the whole point of having a cell phone, well, pointless.

We were smart and bought the insurance for Casper, knowing that the reality was, the phone was going to get lost, broken, or dropped in a toilet. We had several 24-hour periods where Casper went missing, always to be found by me, of course, in the most unlikely places.

Last Friday I picked Rojo up from school and he had Casper. He told me the weather forecast for the next 5 days. He told me the frozen yogurt flavors they posted on his favorite place's Website. He texted his friends. He had the flippin' phone. Then it disappeared. Completely went missing. We checked the car. Three times each. We moved seats, pulled out all the crap in there and tore the thing apart - no phone. We/I tore the house apart. Under beds, every drawer, closet and cupboard, behind cushions, you name it. No Casper.

I told him it had to be missing three days before ordering him a new phone. On day #4 I called, plunked down the $45 replacement fee, and was instructed it would be at our house between 7 AM and 6 PM the next day - and a signature would be required to receive it. I cleared my calendar. I stayed home all damn day. I didn't even go in the backyard to pull weeds in case the doorbell rang and I didn't hear it. I showered and dried my hair prior to 7 just so that wouldn't interfere with anything. I cancelled my walk with a friend. I arranged someone else to pick up Rojo and his friend from school. Finally, about 3:00 PM UPS came, I ran to meet the driver. He handed me the package and jumped back in his truck.

"What? No signature? That's it? I can just have it?"

"No, you're all good," he said.

Grrrrrrr...

I set about activating the new phone, entering in all the contact information I had in my phone, that I knew he'd want in his. When he got home from school it was all ready to go. "Oh, Jasper, you're here! I love you, Jasper!" He immediately took Jasper and headed down to see his dogs and their owners.

Yesterday, I had to give STM's parents a ride in my car, and I opened up the back door and moved the towel that is in there for Flicka to lie on, and there was the flippin' phone. I looked under that towel once. Twice. Three times. Possibly four. Or maybe five. That phone was NOT under that towel, then it was. Just like that.

It's silly to get all worked up about a lost cell phone and the better part of a week spent looking for it. Sometimes what we need to do is stop looking for what alludes us, and let it find us.

I'd Write a Post but I'm Too Busy...

* Ordering Rojo college mascot T-shirts for his birthday in 2 months

* Stepping over a box that came in the mail last week, that I don't want to deal with

* Doing other people favors

* Making To Do lists for everyone and their dog

* Vacuuming dog hair

* Hauling all the missing water bottles, travel mugs and dishes from Woohoo's room

* Trying to figure out a way that people have to pay me for my good advice, in the hopes that they'd actually take it, then

* Raging against our health insurance company that is totally changing our plan and there doesn't appear to be anything we can do about it

* Doing all of the above instead of investigating other insurance options

* Being stuck at home waiting for the UPS driver to deliver Rojo's replacement phone, because the world has stopped spinning and won't start up again until he gets back to texting and checking the weather forecast every 2 seconds

Top 10 Things You Don't Know, and Really Should

10. Woohoo decided which college she's going to on April 11th, dragged it out for further parental torture, and committed on April 15th, herein after known as The Happiest Day of My Life.

 9. Woohoo will be going to a small, Catholic university because we are small, Catholic school kind of people, and if it ain't broke, don't fix it. Plus, we're made of money.

 8. Woohoo had a great birthday, start to stop!

 7. She had Late Start at school, so we had her family party at 7:00 AM, complete with balloons, flowers, a million small but thoughtful presents (think: voter's registration card), and chocolate cake with the candles 1 and 8 on it.

 6. Wednesdays are always her easiest day of school because of the schedule on Wednesdays (do not ask me to explain the schedule that after four years of trying to learn, I have not, and Rojo learned in about 4 minutes).

 5. They had her favorite lunch in the cafeteria (you didn't think I packed her a nutritious meal to take with her each morning, did you?).

 4. She had her last home track meet and all the seniors were announced, they stepped forward and gave their parents one rose.

 3. It stayed dry throughout the whole L-O-N-G track meet AND she PRd (she does javelin).

 2. After the meet she, her boyfriend (yes, he's still in the picture), and two friends from track, all went out for a birthday dinner at Macaroni Grill. Ironically, she went to grade school with the two friends (one boy, one girl) but never really connected with then, and now, lo and behold, with a month left of high school, has.

 1. She bought a lottery ticket today, because she could. She got carded. Remember the thrill of getting carded the first time you are legal, and the pride you have in whipping out that driver's license and showing the world you're 18? Yea, me, too.

Happy 18th Birthday, Woohoo!

May Day

I've always loved May Day. I love the flowers in full bloom. I love the longer days. I love that it's the first day in the month of Mary - a whole month just for Her. I love that our friend Tom was born on May Day. I love that my daughter was born on May 2nd, and May Day was the day I transitioned from not being a parent, to being one, eighteen years ago today.

May Day this year has had particular importance because it's the day high school seniors must commit to the college they are going to. I can't remember the name for it - but there is one - basically, all offers expire on May Day if you haven't committed.

A day of committal.

As I free fall into turning 50, I am well aware of my commitments, and becoming ever more aware of what is not a true commitment, but rather a neurosis. Something I do because I've always done it, not because it needs to be done.

I am committed to touching with gentle awareness the difference.

Forgiven

At least once a week someone apologizes to me for something that didn't even hit my radar. It boggles (or "bobbles" as Rojo says) my mind that they spent a moment worrying about it, fretting, beating themselves up for something they think they said or did that could have been perceived the wrong way.

At least once a week/day someone does not apologize for something I think they should. We're never going to get this right, we humans. We're going to bungle and botch, we're going to offend and defend, we're going to hurt and be hurt. We can't control much of that, but we can forgive. In the words of my gal, Deb Talen, we can open up all our doors, let it out and let it in - forgiveness.

Forgiven, Deb Talen You worry on hurting anybody anymore You worry on small comfort One of us seems not to tremble You make a rift inside me every day Then you choose to stay I walk the edge and push it wider You are forgiven I open all my doors You are forgiven What a heart is for I am no martyr You give me reason I try harder and I wait for a warmer season Meanwhile, You are forgiven I hear a soft noise like a sigh, A singing like a lullaby It is my heart It is this wind that blows through, Where you held me closer, Where we whisper This is this is true You are forgiven I open all my doors You are forgiven What a heart is for I am no martyr You give me reason I try harder And I wait for a warmer season Meanwhile, You are forgiven And it's time to go I cannot stay You cannot know My love So dear Will it be faith or fear? You are forgiven open all my doors You are forgiven What a heart is for I am no martyr You give me reason I try harder And I wait for a warmer season Meanwhile, You are forgiven You are Forgiven

Triple Digits

At 15 years, 9 months, 5' 9" tall, Rojo has finally hit the 100-lb. mark. Through blood, sweat and tears, and DAILY trips for frozen yogurt, I've put 40 lbs. on the boy in two years.

Can't really talk now - gotta go take a bow, kiss the ground I walk on, and all other fitting celebrations of my awesomeness.


* Photo from http://img.webmd.com

Caligynephobia

Many days when I take Rojo to frozen yogurt after school, our friend, C., comes too. Such was the case last week when we went to our favorite haunt, sat on the red stools looking out the window, and tried to ponder what the answer was to the trivia question they had on the chalkboard. "What is erythrophobia?"

We like answering them because A) you get a free punch on your punch card if you guess right, and B) it's just plain fun to guess. We knew phobia meant fear of, but we did not correctly guess that erythrophobia was fear of blushing.

C. said, "Did you know there's such a thing as a fear of beautiful women? It's true, you can Google it."

"No, I did not know that," I said.

"Well, Rojo does not have that fear," C. said.

"Rojo? Are you afraid of beautiful women?" I asked.

"No, I am not," he said matter-of-factly.

"He definitely is not," C. said, "he talks to them all the time at school. He'll talk to anyone! He talks to everyone!"

So, we're crossing calignyephobia off the list of things to worry about. Now on to tackle his entomophobia (fear of insects).



* Photo from http://www.fearofstuff.com

Winner

Took my kids to see the musical, "No, No, Nanette" yesterday at their high school. Had a ball. See how I said that all casual like, just as though it were an every day occurrence for me to take both kids somewhere, for FUN?

Not so much.

STM didn't want to go - musicals are not his thing. The three of us really wanted to go. Nobody dragged their feet. Nobody complained. Nobody negotiated to leave at intermission. Nobody was obnoxious during the performance. We clapped. We laughed. We smiled. We "WOOOOOO'd" all our friends at curtain call.

I sat between my two kids - both bigger than me now, they each had their arm on the arm rests next to me, so were both leaning in on me, and I was able to both enjoy the performance, and the moment for what it was - precious.

Because "Two for Tea" is one of the big songs from the musical, they raffled off a tea-themed basket to raise money for the drama department. I bought three tickets. Knew in my gut the minute I bought them, I'd be the winner (let it be said I think the last time I won something I was in 7th grade). At intermission they pulled the winning raffle ticket out and called the numbers. I held my three and just waited for one of them to be mine.

It was.

I was the big winner all around yesterday.

It Must Be Nice

Every once in awhile you read something and say to yourself, "Yep. Nailed it." That's how I felt when I read Michelle O'Neil's blog post about how to afford what's important to you.

It's funny, because yesterday before she posted that, we were e-mailing back and forth about how it all boils down to intention, and when people say the wrong thing, what matters is the place the "wrong" thing came from. When someone starts a sentence with, "It must be nice to..." it comes from a place of self-absorption and victimhood, which, who has time for?

So, do yourself a favor, click over and have yourself a giggle.

love.

Today is my Hopeful Parents day - please click on over! Thank you to those that let us know there were problems accessing Hopeful Parents. The whole site has moved over to Blogger to correct the problem - as a result, you may need to "follow" again on the new site - lots of good posts you won't want to miss!

love.

Simple Pleasures

You just gotta love an almost-sixteen-year-old boy that is thrilled, thrilled with his $2.00 bottle of Sauve shampoo, Refreshing Waterfall Mist. Who delights in going to the store to pick out a new bottle, because his old one, Tropical Coconut is low, and he wants to smell good. He opens the lid of every single "flavor" they have and takes in a big whiff. Carefully considers which one will make his hair smell the best - "Care, you know I gotta smell smokin' hot."

We went on the shampoo expedition first thing Saturday morning, and he hasn't stopped thanking me since. He's lowered his almost 5' 9" head down so I can take a whiff, no fewer than 10 times. "Don't I smell smokin' hot?"

He was so excited to get in the shower on Saturday, he could not wait for his usual right-before-bed time. "Care, I am going to take my shower at 3:02 today so I can smell smokin' hot for church tonight. Won't I smell smokin' hot for church tonight, Care?"

He did.

The Ultimate Gift

Typically, the weekends are a breathless race to the finish line, Rojo keeping me on a schedule from the minute my eyes pop open, to the minute his close. I hadn't even put both feet on the floor this morning before he started in with the day's agenda. Trying to fit in walking the dog, actually spending time with "the other one," and doing everything else that needs to be done in a weekend, can make it quite stressful.

I was "on schedule" for taking him to his 10:15 "appointment" when STM came home from a long bike ride and said, "How about I take him, then I'll take him to Home Depot. He wants to go to the one in Troutdale today, so we will be gone a couple of hours."

So. I find myself With Woohoo asleep for at least another hour, the dog, boy and husband all gone, and "nothing" to do. You know as well as I do what that means, it means we start with a fresh "cup" of coffee, the iPad for a few rounds of solitaire, then I'm going to go sit in the rocker on the front porch with a blanket, and read more from THE KITCHEN HOUSE, which I've barely started, but already love.

Thank you, STM, for the ultimate gift. I love you, too.

Two Songs Rojo has Stuck in All Our Heads

Rojo quote of the day, said at 6:30 A.M. incredulously:

"I haven't eaten candy all day!"

Love,
Mom-of-the-Year

The Golden Hat

THE GOLDEN HAT

This boy had a golden hat.

The hat was magical. It could talk.

The boy did not have any voice. He had autism.

His hat was always with him.

His hat was lost one day.

Now he had no way of telling them his stories.

His mom and dad became sad.

They taught him spelling on a letterboard.

It was hard.

End.

by Keli Thorsteinsson

Simon & Schuster contacted me awhile back, told me a little about a new book, THE GOLDEN HAT,  and asked if I would be willing to take a look. I was honored to do so, especially after knowing my friend Arthur, and the story of his daughter Carly finding her voice that autism had kept locked away for years.

It all started when Kate Winslet met a mother and son, Margret and Keli, while doing the voice-over work for their movie, A Mother's Courage. Keli has nonverbal autism, and Kate was so moved by their story, she and Margret stayed in touch. One night after her kids were asleep, Kate went to brush her teeth and a great idea popped in her head: she would ask celebrities to don her hat, take a picture of themselves wearing it, and "Think about the fact that many individuals with nonverbal autism have never been able to communicate. Now express something that's important to you; this quote will be included in the book."

A huge and impressive list of celebrities put on the hat, took the self-portrait, and (most of them) included a quote. Many did express something important to them. Reese Witherspoon, already a favorite of mine, wrote, "Love one another..." Kate herself wrote, "I'm here and I love you." Jude Law wrote, "What a wonderful world." Brigitte Lacombe said, "Be kind."

Some wrote bizarre things and I'll be honest, it lowered my respect for them. I appreciate that they are helping a good cause (more on that in a minute), but it boggles my mind that they don't have more important things to say than, "Get off my property," (Woody Allen), or "Knock, knock... who's there?" (Ethan Hawke). I guess I find it insulting, as though they aren't taking it seriously enough, making it all about them - getting the laugh, the attention, the glory.

This is serious business. My favorite part of the book is the section featuring people with nonverbal autism (including Carly), and the first words they communicated (and the age at which they did so), through augmentative communication devices. Margret's son Keli's first words at age ten, were, "I am real." I needed the celebrities in the book to get that, and many did, but many did not. These are real people, every bit as important, every bit as impressive, every bit as deserving of attention and praise.

More.

One boy was asked by his mother, "What have you been doing all these years?" and the first word he communicated (age nine) was, "Listening." A girl that started communicating at age eight said first, "I don't like flattery."

These people are here to teach.

The Golden Hat Foundation raises money to create housing for adults affected by autism, a cause near and dear to my heart. Do yourself a favor, buy this lovely coffee table-style book for yourself, your loved ones, and maybe one for Woody Allen.

No, as a Matter of Fact, I Didn't Know That

So, Rojo walks into the kitchen and asks, "What are you doing?"

"I'm making turkey sandwiches for Woohoo and me."

"What kind of turkey," he asks, having never had a bite of turkey in his life I can't believe he's asking me, "pepper? Roasted? Honey? Smoked?"

"How do you know so much about turkey?" I ask.

"Well you know I'm part Turkish," he says, without missing a beat.

Little Lies I Tell Myself

I tell myself (and everyone else), I only drink 1-2 cups of coffee a day. See that poor excuse for a coffee cup on the left? That's 6 oz. That's what is considered a "cup" of coffee. I don't waste my time on that cup or the horse it rode in on. Ditto the second one on the left. By the time you get to the pink and white polka dot mug, you've gotten my attention. That is just about right for "cup" number two long about 10:00 AM. I don't get out of bed for anything less than the one on the far right.

Other little lies I tell myself include, but are not limited to:

* If I don't do it, no one will.

* Whatever it is I don't want to do is going to be painful/difficult/hard/expensive/brutal.

* Life is hard and only going to get harder.

* If I haven't done "it" by now (whatever the "it" of the day is), I'll never do it.

* There is a scarcity of time/money/attention/energy and I already don't have enough of it.

Breaking these negative thought loops is a challenge, but fully caffeinated, I know I can do it.

Autism Awareness

So sue me, I missed Autism Awareness Day on the 2nd. I find it hard to believe that there's a soul alive that's unaware of autism. 1 in 88 kids has it. If you don't have a kid with it you most certainly know of one that does.

Having said that, someone innocently asked me on Sunday at church if we'd all had a nice Spring Break. At which point I ripped him a new one. "NO, we did not have a nice Spring Break. It rained an inch a day. We talked about the ice cream truck and played ice cream truck songs on the computer from 6 AM to 8 PM. We..." I ran through my entire litany of things I'd been just storing up for that very reason.

I then called Nancy and said, "Can you believe that anyone that knows me, dared to ask if I had a nice Spring Break?" I was outraged. Righteously so? No. Nonetheless? Yes. It hit my "You Just Don't Get It" button which is about as big as the Sears Tower.

My friend Val, that has a kid on the complete opposite end of the dreaded Bell Curve, does get it. "Did you survive Spring Break?" she asked me Monday when I popped by her office for something.

"Thank you for not asking if I had a nice Spring Break," I said.

"I know better than to ask that," she said with a smile.

"Did you survive with grace?" she asked?

Obviously not, or I would not have bitten the head off of a man just being nice. Survival can't be the only goal, we can't forget about grace.

Moving the Chains

So, I'm not sure if it's that we had a sunny day (after, I swear to God, an inch-a-day TFBS that we called "Spring Break), or if it's that Mercury, Mars and Saturn are about to turn around and go direct, or if it's that I had the slip cover lady over to measure, thus forcing me out of "the" chair, but whatever the reason(s), I got up and got going yesterday.

I made phone calls that had been on my list for months. I scheduled appointments. I made new lists and satisfyingly scratched things off the old one(s). STM came home and I told him all about it. "I don't have a case worker yet, but I called Joan, and I found out WHO to call (and who not to call). I have a lunch date with Kerstin (who has an almost 17-year-old with special needs), I am meeting on Wednesday with a woman from "independent housing," I am meeting next week with someone to talk bout the pros and cons of guardianship/SSI/Medicaid and waivers for transitional services. I have put the wheels in motion, and it feels good. And scary. And overwhelming. But better than sitting here pretending it's all going to go away. Even if all this is for 'nothing,' it feels like something."

"So, you're moving the chains. I'd say you got yourself a first down," he said. Now, I know " " this much about football, but I do know that a first down means progress. Doesn't mean a touch down, but it means you are that much closer to one.

What struck me about yesterday was how many people were very happy to help. Very happy to meet. Very happy to tell me what they've learned and show me the ropes. Every time Rojo's needed a guardian angel, he's received ten.

And so have I.