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.

Carly's Voice

In the summer of 2010, I went to the Iowa Summer Writing Festival to take a memoir class from the incredible Hope Edelman. In that class was someone else incredible, Arthur Fleischmann. Arthur and I just "clicked" immediately. He was there working on the book he was co-writing with his daughter Carly, who has non-verbal autism but found her "voice" through an augmentative communication device. I'm happy to say they completed their book, Carly's Voice, and just this week it was published.

Arthur has the gift of being one of those super funny, gregarious, entertaining and delightful people that write just like they talk, and those gifts helped get him through the worst of times, and share joyously with all of us the best. I had the honor of reading an early version of the book, and look forward to my "real" copy arriving any day now. If I ever get Arthur to Portland I'll let you know, he'd be a delight to hear speak, and I promise you'd never forget his stories of what it's been like being Carly's father.

To learn more about the invincible Carly and to order their book, click here.

Wild

Cheryl Strayed does not need my help to sell her book, WILD. She has Vogue,  Reese Witherspoon and the New York Times all doing that very well without me, but I want to help anyway. That's the effect Cheryl has on people - she brings out the best. I was lucky enough to meet Cheryl in 2006, right when her first book, TORCH came out. I met her at a "salon" - an in-home reading, then shortly after that I hosted her at my house for a salon where the topic was mother loss.  I will never forget my very very first exchange with Cheryl - she came up to me and said, "Hi, I'm Cheryl." Might not sound memorable (or original), but it was. She was approachable, accessible, human, warm, kind and very very likable. She had just had her second baby and I wondered how on earth she was managing a book tour with two tiny children.

Cheryl and I struck up a friendship and enjoyed several more evenings out together talking about family, our very different histories, writing and life. The last time I saw Cheryl socially, she had written half of WILD and was about to go lock herself away in a cabin to crank out the other half.

I was lucky enough to read an advanced reader's copy of WILD several months ago. I loved it. It made it extra special because I knew the woman telling the story, but I was learning about a huge chapter of her her life I knew nothing about. I can honestly say, I couldn't have survived a day doing what she did for 100.

The physical challenges of hiking the Pacific Crest Trail alone are impressive, but what was even more so, was the psychological transformation Cheryl underwent, and beautifully captures in this book. To know Cheryl is a privilege - by reading WILD, you will experience that privilege.

To buy your copy of WILD, click here.

Changing

Even STM agrees, it's time to replace the slipcovers for our furniture in the "reading room," aka, the iPad/Flicka room. Since we don't dine, our "dining room" has a love seat, big chair and an ottoman in it, two little end tables and a plant. Smallest room in the house. We spend 90% of our family time in it. I spend 90% of my life in it, and have all the technology a girl could want, right at my fingertips: iPad, MacBook, cell phone, cordless landline phone, chargers and cords going every which way. I may never leave this room. The kitchen is just right there, every book I'm in even considering reading is stacked on the table, my reading glasses, calendar, pencil and coaster for my coffee - all right there. If I could just get STM to move the washer/dryer in here too, I'd really be set.

Back to the slipcovers. When we moved into the house before this one, almost fourteen years ago, we bought these pieces of furniture for the then family room. We washed the slipcovers that came with them so many times they were trashed in six months. We had them replaced with custom made denim ones, and they've been rock stars. But, two kids, a dog, misuse of Sharpies, years and years (and years) of diaper changes on the ottoman later, they are, well, let's just call a spade a spade, gross. They are faded. They are ill fitting. They are threadbare. They are stained. In places they even have holes. They are just like your favorite pair of jeans - they hold memories and meaning and if they could talk, well, the stories they could tell.

I convinced STM that this time the slipcovers would last as long as we want and need them to - for the rest of the life of the furniture. We've got one kid almost out the door, and another one that no longer needs his diaper changed, or writes with a Sharpie on furniture and walls (that reminds me, note to self: we need to repaint several walls, too). We are no longer the couple with two small kids that we were fourteen years ago. Our lives have changed. Our family has changed. The way we use our house has changed. And all you can do when everything is changing, is change along with it.

Starting with the slipcovers.

WHAT HAPPENS NEXT?

The day I wrote the post entitled, "What's Next?" I got an e-mail from someone helping to promote the book, WHAT HAPPENS NEXT? Raising a Son with Autism: A Father's Story, by Rick Schostek. The publicist was doing their homework, came across my blog, and wanted to know if I'd take a look at the book and feature it on my blog. I agreed. I'm glad I did.

WHAT HAPPENS NEXT is a sweet book, and quickly moves through the years of raising a son with autism, and wraps up the book with some very helpful and concrete information about just that: what happens next. What do you do when your child "ages out" of the system? What do you do when you need to make hard choices about guardianship, SSI, Medicaid, Special Needs Trusts, housing, employment? All of those fun things that haunt my every moment.

I know I'm not the only one that feels the responsibility, constantly, and I do mean constantly, of having  a child that will forever be a child, long after they are an "adult." The whole thing totally overwhelms me and drives me straight to the chair-and-a-half with Flicka and the iPad. I would prefer to lose myself in Solitaire, than delve into all of this, but I know it's right around the corner for us. Rojo will be 16 in July, a lot of this needs to be handled before he turns 18. We all know just how slow and bureaucratic "the system" can be.

The book was helpful to me on many levels - it's comforting to know there is a roadmap and to have it shown to me. It's comforting to know that for at least one family, it was navigable. It's comforting to know that I am not the first and I won't be the last - in fact, the numbers coming up behind us are exponentially higher than those that have gone before.

We are not alone.

To read more about, or to order your copy of WHAT HAPPENS NEXT? click here.

The Best Laid Plans

My plan was for us to do all our college visits Woohoo's junior year, narrow it down, apply to 3-4 schools  immediately in the fall, get all her applications in by Halloween, have the answers by Thanksgiving, and then just relax the rest of the year knowing (smugly) that "our" plans were all in place for college.

I dragged her to the college visits. I held a gun to her head to apply to the colleges. The acceptances came. Now here we are with just a little over a month left until the drop dead date colleges impose (May 1st) to get in or get out, and she still hasn't decided.

This indecision was doing nothing for our relationship. This indecision was doing nothing for my digestive system. This indecision was doing nothing for my marriage. Still, I continued to make this my problem to the point that I was absolutely in a complete dither pretty much 24/7.

Until I remembered everything I learned about cord cutting. I realized we were totally bound up in this energetic pathway to no where, and in fact, I was holding all the responsibility so she didn't have to. I had to do something to give her back her power, and regain some of mine. Every day for a couple weeks now I've visualized cutting the cords that bind me to her decision and keep the onus on me, I visualize the unhealthy cords being burned in a healing fire. I visualize her energy and power returning, and me getting back on my life, and out of the driver's seat of hers.

I'm sure all my we-have-done-private-education-all-the-way stuff is in there. I'm sure my we-only-have-one-kid-going-to-college-so-it-better-be-good stuff is in there. I'm sure my everyone-else's-kid-is ________ stuff is in there. Basically, a lot of stuff that didn't need to be in this decision of hers was in there.

The cord cutting has helped. It has helped me. I feel my energy returning. I feel she's moving from the back seat to the front, even into the driver's seat. I feel like whatever choice she makes will be the right one for her. I feel like the colleges have imposed a deadline on her decision that makes it so I don't have to.

I feel like her turning 18 in May can, and will, be a gift to both of us. A gift we'll both be ready to receive.


Photo from: http://www.byregion.net

Ambrosia

I was mulling over just what it was I was trying to articulate for today's post, and while processing, I read this by my friend, Kario. That's what I'm trying to say: few things are harder, or more rewarding, than sitting in silence with yourself.

Look around, we're all numbing ourselves with food, alcohol, work, gambling, shopping, Facebook, busyness, you-name-it. So few people know how to just "be." When you come across one of them it's noteworthy. I'm working on being one of those people - the be-ers of this world, after 49 years of being a major do-er.

It is hard. But it's getting easier. Not there yet. Not even close to there yet. But I've tasted the nectar of the stillness gods, and it is sweet.


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

Room

I am probably the last person on the planet to read ROOM, but if not, if you still haven't read it. Do it. Immediately. But carve out a full day where you do nothing but turn pages (or sleep because you were up all night reading). Usually I am NOT one of those people that stays up too late reading - reading makes me sleepy at night, and I'm lucky if I get five pages in before nodding off. Not ROOM. Started the book on Thursday, stayed up reading and reading and reading, and couldn't wait to get all my pesky chores done on Friday so I could curl up and finish it.

While you're scheduling, add in at least 2-3 days of "after thought" and grieving. You will not stop thinking about this book, and to pick up a new one too quickly, feels like a betrayal. You're not ready. The book must be properly grieved.

Also, warn all your friends and family that you'll be able to speak of NOTHING else while said reading and grieving are taking place. You will be CONSUMED by this book. If you are a writer you'll be tempted to throw your computer out the window, you'll think and I call myself a writer.


Terry recommended this book to me over a year ago, and it took me that long to decide I could "handle it." It's the story of a woman and her son who are held captive in an 11x11 foot room. If the book had been told from her perspective it would have been too much to bear, but it's told through the eyes of her five-year-old son, Jack. Jack is loved and cherished and has what every child wants: a devoted mother, all to himself. He thinks life inside the room is great.

If you are a parent that would do anything for your child, this is the book for you. If you like a thriller, this is the book for you. If you want to forget all your problems and become obsessed with someone else's for the time being, this is the book for you.

For more information on ROOM, click here.

Please click on over and join me at Hopeful Parents today. Thanks!

Happy St. Patrick's Day!

"I take for my sureties:

The power of God to guide me,
The might of God to uphold me,
The wisdom of God to teach me,
The eye of God to watch over me,
The ear of God to hear me,
The word of God to give me speech,
The hand of God to protect me,
The way of God to go before me,
The shield of God to shelter me...

Christ be with me, Christ before me,
Christ behind me, Christ within me,
Christ beneath me, Christ above me,
Christ at my right, Christ at my left,
Christ in the heart of every man who thinks of me,
Christ in the mouth of every man who speaks to me,
Christ in every eye that sees me,
Christ in every ear that hears me."

               - St. Patrick

Two Great Reads

Really hard to sleep while I've been "tired," since all I do is blow my nose and cough. But, here's the good news: I'm on Season 5 of "Brothers and Sisters," have become EXPERT at Solitaire, and have read two of the best books.

THE SCHOOL OF ESSENTIAL INGREDIENTS is one my mom lent me, all she said was, "You'll love it." I did. Even though it talks a LOT about food and that is about 1001 on my list of things I'm interested in reading/talking about. It's one of those sweet books you can read quickly, but long after the characters float around in your brain in a happy way.

Then another friend recommended HEFT. She said it was un-put-down-able. I found that to be true. I read half the first day, half the second, and I am NOT a fast reader. I don't even want to tell you too much about it, it would spoil it. Just get the book and enjoy great writing and again, wonderful characters.

Happy reading! Hope you all keep from getting "tired!"

Funny

So, turns out I caught Rojo's "tiredness." He came down with it Friday, and it hit me on Saturday. We spent the weekend mutually miserable. He kept telling me on Sunday, "I am 68% percent better. I will be 100% better tomorrow. I will go to school tomorrow." Since he hasn't missed a day of school in years, I believed him.

Monday morning came and I looked through my watery eyes and croaked through my up-all-night coughing voice, "How are you feeling?" I could tell by the look in his eyes he wasn't his promised 100%, but I also thought his desire to go to school would be so strong he'd tell me he was fine.

Sure enough, "Fine," is what he said.

"Do you want to stay home with me one more day?" I asked, again, believing he'd never go for it.

"Yea," he said. "I'm still pretty 'tired.'"

"Okay, I will call the school and let them know you won't be here." Relief flooded his face.

We then spent the day in self-imposed quarantine, trying to contain our constant sneezing, coughing, blowing, to two rooms of the house - him in the TV room, me in my room just down the hall so as to minimize the chance of Woohoo and STM catching whatever it is we have. (And if you think I was going to spend the day in the TV room with him watching "Zach and Cody" you've got another think coming.)

I'd offered over the weekend to go get frozen yogurt and bring it to him, but he'd declined. On Monday he  e-mailed me from his iPad in his room, to my computer in mine. "Did you want to get frozen yogurt today? Two bowls. Regular flavors. Graham cracker, Oreo and 2 gummy worms on top." Of course I was jumping up and down to leave the warmth of my house, bundle up and face the elements, drive to get yogurt looking and feeling like you-know-what.

When I got home with the yogurt he came downstairs and sat at the breakfast bar to eat it. He grinned from ear-to-ear, and at one point started to laugh. "What's so funny?" I asked.

"Heaven!" he said pointing skyward, as if that was the most logical answer in the whole entire world.

And who am I to disagree?

Sick Day

Knew something was amiss the minute I picked Rojo up from school yesterday, and he declined my offer to take him for frozen yogurt, AND didn't want to go to the school to play with the dogs and see all his friends. "I just want to go home and have quiet time." Although there are plenty of hours in the day when Rojo is doing his thing, he is never, ever, ever quiet.


He was. Like a stone. "Are you sick?" I asked.

His face got red and tears sprang to his eyes. "You know that hurts my feelings when you say that. Don't say I am sick! I am not sick!"

"Should I say you're just tired?"

"Yes! Just say I am tired! I am not sick!"

"I know you're not sick, but I'm going to give you Motrin - it will help you not feel so 'tired.'"

"Okay," he said without a fuss.

Gave him Motrin, got him cozy in the TV room with Flicka and some show aimed at the preschool set, and he stared silently at it.

I suggested we "start the process" for bed early - an hour early - and again, he didn't protest. He obligingly let me brush his teeth, smear his head with Clearasil and tuck him into bed.

When he got up at 5:50 he went straight to the Motrin and asked for another dose. "I don't think I can do what we were going to do today - I'm still... 'tired,' but I will feel better tomorrow."

I cancelled our plans (an all day event for his upcoming Confirmation) got out the sleeping bag, made him a proper bed in the TV room and got him situated with water, snacks, Kleenex, a waste basket and Flicka. I've checked on him a million times, and he's eating and drinking, perking up by the hour and was even YouTubing ice cream songs a little bit ago - complete with humming and thumping of his foot.

It's a guilty pleasure, but when ADHD takes a sick day, it's kind of nice.

Tired

Took Rojo to the eye doctor yesterday morning for his yearly exam. Used to go every three months. Used to put drops in the good eye every single day of a squirming, screaming, little boy since he wouldn't tolerate a patch, and his bad eye was bad, and we were all about strengthening the bad eye before the window of opportunity closed. Used to be the appointments were pure torture, he'd have to get dilated, it would take three of us to hold him down for that. Used to take two hours for the appointment what with all the waiting room, dilation, waiting room, exam by the assistant, exam by the doctor, etc. Brutal.

Now we whisk in, sit briefly in the waiting room amongst all the other parents at the beginning of this journey, holding their small children on their laps, and bracing themselves for what's to come. And come. And come.

We were at the doctor's less than 30 minutes total yesterday - no dilation, he can accurately tell you what he can and cannot see, and we're out of there - usually with a new Rx that's slightly but not significantly different. "Normal change in vision."

The doctor looked through Rojo's big, fat file and said, "Wow, I've been seeing Rojo for 10 years, and he's been coming to this office for thirteen (his first doctor retired) hard to believe," she said.

"Not for me," I said. "When he first came here he didn't know his letters, the doctor gave me pictures of things like a birthday cake, a ball, and an airplane. She wanted me to practice with him at home, so he could give them a better idea of what he was seeing. I blew up the pictures, mounted them on card stock and then laminated them. They were giant flash cards I used to drill him with so he could come and take his eye exam."

When STM asked about Rojo's eye doctor appointment, I told him the whole story about how much used to go into each visit, how often we had to go, how far we've come. "No wonder we're tired," he said.

"No wonder," I said.

A Good Egg

When I'm not "busy" playing solitaire, I'm making my way through five seasons of "Brothers and Sisters." I can proudly say I'm on Season 4. One of the story lines involves brother Kevin and his partner selecting an egg donor for the child they hope to have together.

This is pushing all my buttons, and not the ones you might think. No, the big button getting pushed is the whole idea that there are good eggs and bad eggs, and one can select the good by scrolling through an Internet data base, and avoid the bad ones all together.

When a woman well into her 40's gets pregnant, we all know the chances for a "good egg" are slim. "Infinitesimal" one might say. Then we all have our opinions about what one should do knowing she's passed on a "bad egg." I'm not here to debate the right to life. I'm not here to sway anyone to one side or the other on any of those hot topics. No. I'm here to ask us to reconsider what we consider "good."

Had I been an egg donor in my early 20's, I may very well have been chosen. I would have looked mighty good on "paper" (and come to think of it, that's all we had in my 20's). What would the couple have done if after carefully selecting me, they came to have a Rojo? Wanted their money back?

I don't think that Rojo is the result of a "bad" egg (or sperm). I don't think there's anything bad about him or his conception, or the life he leads and the ones he touches.

* Photo from http://www.women-health-info.com

Solitaire Wisdom Pt. 2

I've come to the convenient conclusion that playing solitaire on the iPad, while snuggling Flicka in the chair-and-a-half, is about the best possible use of my time. Somehow the tap, tap, tapping and moving the "cards" around opens up places in my mind that I did not previously have access to.

Plus, there's a "hint" button.

I've set the game so that it only deals winning hands. That means, it is possible to win each game. Doesn't mean I always do. There are all kinds of ways to screw up, or simply guess wrong, when faced with two seemingly similar choices. The beauty is when you don't know what to do, you simply click "hint" and it shows you what you can do. Then, if you still screw up, there's the ever-helpful "undo" button. As a last resort, you play the game, get stuck, can't win, know it's possible to win, you just click "replay game" and you take everything you learned from your previous attempt(s) and go at it again.

I do think life is a game of solitaire. We have all kinds of hints, undos, and even re-plays with the winning hand we're dealt. It's just a matter of using them.

What's Next?

Took Rojo to the doctor for a camp physical. For a boy that never washes his hands, eats the least nutritious diet of anyone I know, doesn't exercise, etc., he is pretty much the picture of health. He hadn't been to the doctor, not once, since his last physical a year ago. In that year he's gained 21 pounds. In two years he's gained 36. At 15 1/2 years-old and 5 ' 8" he's still not even 100 lbs. He has a ways to go, but we're heading in the right direction. Every pound that boy gains, takes a good month off my life, I swear. What he'll eat, when and where is a full-time job.

Had three dear long-term friends over for dinner last week. They've known me since before I was married, before Woohoo, before Rojo. We were talking about "what's next" for each of us. I said I was just riding this lull I'm in, and not sure at all about what's next. "I can't really work, because I will always have Rojo to take care of when he's not in school, and anything else I do needs to fit in around that, I can never get him to fit in around whatever else it is I do."

"Obviously," they all agreed.

I did the math. Rojo has three more school years left. Three more years where for 9 months of the year he'll go to school at least most of the days. After that he'll be in some sort of transition program, but the chances that it will be M-F for full days are pretty slim. Then he'll be mine, mine, mine. I will work like a dog to get him some meaningful employment, but let's face it, it will not be full-time and will require my involvement.

STM tells me all the time he won't make it to 60. Woohoo is leaving for college in the fall. We have three elderly parents. Not to be morbid or pessimistic, but the fact remains, it is inevitable that I will be the full-time caregiver of a very hyper, differently abled person eventually.

All that goes into my thinking when people ask me, "What's next?" As most of my dear friends are, or are on the brink of being, empty nesters, I have come to accept that my path takes me elsewhere. True, STM may live a good long time. True, other angels are in our lives and will doubtlessly continue to come into our lives, and I will never be "alone." True, Rojo may be able to live in some sort of supported housing situation at some point. True, none of us really knows what's around the corner, we just think we do, and as I always say, "The only difference is special needs parents just know that they don't know."

True.

The question for right now is, how do I want to spend the next three years of my life? Writing? Re-writing? Volunteering? Cleaning up the same messes over and over and over? Re-decorating my house? Taking a class? Learning how to do something new? Sitting on my can playing Solitaire?

I don't know. And if I've learned anything, it's when you don't know what to do, do nothing.


* Photo from http://redpenconfessions

Score One for the Ladders

I just e-mailed two friends to tell them I took their suggestion (they had the same suggestion), that I watch and get properly hooked on the PBS show, "Downton Abbey." When I was in Philly visiting Terry, she, her husband Greg and I, started the series on Netflix, and worked our way through the entire first season. Then, Greg being all techy, hooked up his laptop to their fancy schmancy system and we were able to stream onto their big screen, a few episodes of Season 2 straight from PBS.org before, sadly, I had to go home. Plans are already underway for me to time my visit next year for the premiere of Season 3.

But that's not the point.

The point is two people that know me well, my tastes, my likes, my dislikes, all of that, recommended something to me, and I'm super glad I followed up and tried it. I had to e-mail them to thank them, and suggested they gloat for awhile in the knowledge that that their suggestion was heard, AND followed, AND appreciated. The big trifecta.

I would be so smug there'd be no living with me if people took all my suggestions/advice! And I'm full of it! Got all kinds of ideas of what people should do with their lives. I've reluctantly come to accept, however, that the struggle and journey is where the ju-ju is, and if we all went around following good advice it would be like playing "Chutes and Ladders," and getting all lucky cards and going straight to the top of the board via long ladders, never having to mess with a chute. Sure, you'd "win," but what would be the fun of it? You'd actually be bored and find the whole game a waste of time.

Winning isn't the point. The ups and downs are the point.

Still, I'm glad I took their "ladder," and am excited to see where the next ladder might take me if I allow myself to take it, too, avoiding the "chutes" my ego has in place. The ones that tell me I have to do everything the hard way. The ones that tell me no pain, no gain. The ones that tell me that surrendering is quitting, and that to let go means to give up. You know the ones.

Spread the Word to End the Word

I had lunch today with my friend Kerstin. She is a public high school teacher and she had an incident with a student using the R-word that was so upsetting (too upsetting for me to even recount), she was spurred to go home and spend the next four days creating this video. As she said, "It was a net gain."

She found the making of the video cathartic - and brutal. Hard to go back and look at all those pictures. Hard to go back there and look at all the heartache, hard work and heroism. Hard to go back. Period.

Her oldest daughter has different memories. Happy ones. Times that were brutal to Kerstin, are remembered as happy family times to her oldest daughter. "That's because we had scheduled grieving," Kerstin said. "We'd force ourselves to go out there and do 'fun' things, get our oldest daughter off to bed, then sob our hearts out."

Now Kerstin can grieve at her leisure. Producing this video helped her to do so. It also helped her to heal, which good grieving always does.

Top 10 Things Rojo Has Proposed Giving Up for Lent

10. Coke (which he doesn't drink)

 9. Carrots (which he doesn't eat)

 8. Taking a shower

 7. Brushing his teeth

 6. Making his bed

 5. Taking out the garbage

 4. Using a nice tone of voice

 3. Traveling to Europe ('nuf said)

 2. Hamburgers (which I'm forever trying to get him to eat)

 1. Vitamins

Lenton Vows 2012

Lent is a time of prayer, "fasting," and almsgiving. I've been mulling over what to do for Lent this year, and since it starts on Wednesday, I'd better get to gettin. I think what I'm going to do is "fast" from buying coffee when I'm out running around. I don't need the extra caffeine, I don't need the extra dairy, I don't need the extra expense, I don't need any part of it whatsoever, yet every single day I wrestle with myself over whether to "just pop in" on my way to ______, ________, or ___________. I think what I'll do this year is add up the average I spend per week on this nasty habit, and donate it to some cause that will feed starving people actual food, instead of whatever it is I'm consuming that isn't doing one single thing to "feed" me.

I also think I'll put one item per day in the Goodwill bag (might not actually go to Goodwill, but for me that is synonymous with donating). God knows there are at least 40 extra "things" lying around here, despite the fact I donate a huge bag at least once or twice a month. There's always more than we need, and that just ain't right. I'm all for having everything we need, but do I "need" 20 purses? 18 of which I haven't used in years/decades? Instead of doing some deep purge, I think I'll just look around the house mindfully each day, and ask myself, "What could be better used by someone else?""Who needs this more than I do?"

As for prayer, I am going to work on using my morning prayer time to empty my mind, not run through "the list." I've gotten better about not making prayer a fancy wish-making time, even basking in gratitude at times, but still, I have a long way to go in making it a time of listening, and not "speaking."

And, as always, we will not be "fasting" from saying alleluia at the Link house.

Alleluia.

Alleluia.

Alleluia.

Amen.



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

I am at Hopeful Parents today writing "the other one." Thanks for joining me there!

love.

Lucky Iowa

Luke 17:21

"... nor will people say, 'Here it is,' or 'There it is,' because the kingdom of God is within you." (NIV)

So the other night while Rojo was eating his dinner, he reminded me that in a few short years we'd all be living in Anaheim, he'd be working at Disneyland, and I would never need to worry about missing him, because we'll live together forever.

"One problem," he said between bites. "Do they have heaven in Anaheim?"

"Heaven isn't a place," I answered, "it's a state of mind, it's within us - it's the part of us that's a part of God."

"No," he said, "heaven is in Des Moines."

Dearly Much

Had a great birthday yesterday, top 3, and am struggling to think of which ones beat it, so let's just go ahead and call it top birthday of all time.

We had our family gift exchange at 6:30 AM. I had little valentines for everyone and Rojo had made cards he was super excited to give. I'd helped him, but when it came to do mine, he wouldn't let me look, instead, grabbing the card and putting it in the envelope himself, then asking me to hide it so I wouldn't find it. He did not disappoint. He never does. Feels good to be loved dearly much.

STM had given me a dozen red roses over the weekend - wanting to beat the rush and making sure they didn't run out, then thought it was silly to hide them until Tuesday, so gave them to me early to enjoy, which I did. Nice to stretch it all out, I say. Birth "day" just isn't enough. I require a full week. STM also gave me a jigsaw puzzle, suggesting it might be nice to get back to that old past time of mine (and give Rojo back his iPad). Woohoo gave me really sweet and thoughtful gifts, too.

Kathleen made an early morning drop off of balloons, tulips (my fave), a bottle of yummy wine and running gloves which I'd asked for. NEHBM of getting what you ask for. Got the kids out the door and then STM and I took Flicka on a really nice walk, getting home right before it started to pour. He left, I had fun cleaning up and doing things I love like starting the dishwasher AND the washing machine at the same time, which never fails to give me a neurotic sense of joy.

Then I marched myself down to the closest Starbucks and redeemed my free birthday drink - grande mocha, full fat, with whip. Ran into our friend Tom there and enjoyed a visit with him. Came home with my drink, curled up in the chair-and-a-half with Flicka, got out the iPad and played solitaire, while taking phone calls and texts from friends far and wide wishing me happy birthday.

Got picked up at 1:00 by Nancy, who gave me some lovely (but too personal to mention) gifts, and drove me to have lunch with Kathleen and our friend Diane - the birthday group. We lingered so long that I only had a little while to freshen up before going to dinner with STM! We went to our favorite haunt, ordered exactly what we always do, sat in our favorite booth, and had a leisurely, delightful meal and conversation.

Came home to a house with no Woohoo, no Rojo, no Flicka, and did what anyone else would do under those circumstances - went right into the DVR recording of "The Bachelor" from the previous night.

Just a day filled with love and special people from beginning to end. Thank you for the calls, e-mails, texts, and Facebook messages! I love you dearly much!

Rojoism of the Day

So it must be all the probiotics in the $50 + worth of frozen yogurt the boy eats a week, but let's just say, he's having no problem keeping things "moving." This weekend he went into the bathroom for the second time that day to do you-know-what, and came out saying, "Ahh... that was great. Now I'm not complicated."


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

Letting Go

So, had a great trip to Philly to see Toeless. As an extra bonus, I planned my trip to route through Minneapolis/St. Paul with a long layover. My agent lives there, and we were able to have a delightful two hours together catching up, laughing, talking shop and just enjoying each other's company. Super fun. She is full of good ideas and determination to get this book "out." If anyone can, she can! Go ahead and light the Marys, though, if you're so inclined. "Let it be," is my prayer for the book. Whatever "be" is. I no longer MUST have it published to consider myself a "real" writer. By the same token, I am no longer holding it back energetically because I'm afraid. I've let it go. And it feels great.


Terry and I had 3 full days together. We slept in, drank excellent coffee from carefully selected mugs, went for long walks, showered about 2 PM and then started Wine O'Clock by 5 (although in four nights we didn't even finish 2 bottles). Really, it's just impossible not to have fun when you're with Toeless. Impossible. I laugh just thinking about her. And laugh we did. At one point we had that intoxicating can't catch your breath, can't stop howling, tears pouring down your face and snot running down your nose kind of five minute laugh. Your basic heavenly experience.

We did have plenty of HDRs, though, too, it wasn't solid hilarity. We actually got into it immediately when she picked me up from the airport, and she said, "It's amazing what happens when you stop white knuckling it." She was talking about business, clients, making everyone happy, and I thought about how far I've come in being good with the outcome of my book.

Not enough can be made of the fact that when I met Terry 17 years ago, she worried all the time about two things: her weight and money. Year after year during my visits these worries were ever-present, until a few years ago she consciously decided to stop fixating on her weight. She hasn't gained a pound since doing so. Then she let go of her anxiety around money - the scarcity mentality - gone. Poof. Her expenses have, and will, only go up (she has a son going to NYU in the fall). Her fear that there will not be enough, however, has only gone down.

You can read all the self-help books, listen to all the experts, know that it's true, but to behold it for yourself when you see a loved one profoundly lighter, is powerful.

Perfect Understanding of Himself

Lots of things to tell you, all in good time. About my trip to Philly. About my planet-imposed blogstipation. About my feeling like a big chapter is closing, and another exciting one is opening up. About turning 49 next week. But for now, we are all in need of a Rojo-ism, am I right?

At Rojo's school he has a class called "Support." This semester they are going to help the kids better understand their own diagnosis, learn to self-advocate and form a written body of work they can pass on to future teachers, to help them work effectively with them. Rojo has three eligibilities: ASD (PDD-NOS), Communication Disorder (long story why I wanted him to have that, on top of ASD), and ADHD. He knows in no uncertain terms he has ADHD. He can tell you all about how hyper he gets without his meds, how it makes it hard for him to focus, how he's easily distracted, etc. He knows that learning is hard for him. He knows he's in a class where everyone needs extra help. He knows he's going to camp this summer where again, everyone has "something" and needs extra help. We've talked about Asperger's, classic autism and PDD-NOS and how that makes up autism spectrum disorder, which he has.

Every time it comes up or I bring it up, he jumps off the topic immediately. I've always taken that as my clue that he doesn't want to talk about it, or is comprehending it as best he can at that particular point. But because there is going to be quite some discussion/work on this at school, I brought it up again last night.

"Rojo, you know how we've said you don't exactly have autism or Asperger's like _________ or __________, but that you do have autism spectrum disorder? Well, you're going to learn more about that in Support, and learn how to advocate for yourself, and help your other teachers understand you better."

"Will we go around the room and tell what we have?" he asked.

"I'm not sure."

"I want to. I want everyone to ask me what I have, so I can tell them I have optimism!"

Need I say more?



* To order your own IEP T-shirt, click here.

Oxygen Mask

Here's a neat Website you should know about. I may or may not get some ass kissing in this particular post I'm sending you to. You've been warned. Oxygen Mask

love.


And speaking of oxygen masks, I'm off to Philly tomorrow for my annual oxygen mask-a-thon with Toeless Terry. See you on the other side!