Friday, April 30, 2010


Came across a survey with three seemingly repetitive questions. On a scale from 1-7, 1 being extremely dissatisfied, 7 being extremely satisfied:

1) How satisfied are you with your marriage/relationship?

2) How satisfied are you with your relationship with your spouse/partner?

3) How satisfied are you with your partner as a spouse/significant other?

The more I think/obsess/ponder those three questions, the more I like them. What do you think?

Photo from:

Thursday, April 29, 2010


Rojo tells me every single night when I tuck him in, "Don't forget to leave your door open." His bedroom is straight down the hall from ours, our bedroom doors face each other with, oh, I don't know, twenty feet between them? He doesn't even care if I go straight to my room after putting him to bed, what matters is that my door remain open.

I don't forget. I keep my door open. Every night. I reassure him repeatedly.

And still, I got this note the other day. Made me think, what "door" could he be talking about?

Tuesday, April 27, 2010


Was a time when I really believed Rojo would catch up. Developmentally delayed meant just that to me: delayed. Later. Eventually. I see now that he will never be caught up, and that's okay. He's where he is and where he is is perfect. Where he is going will be revealed. All will be well. Not better. Not worse. Just different.

One of the things the school psych that recently evaluated him got stuck on, was his trouble in answering what he wanted to do for work when he grew up. I, frankly, thought he'd say a garbage man, or ice cream truck driver, but apparently he said, "I want to be a dad."

"Yes, but what will you do for work?" she persisted.

"I will work with my kids," he said.

"Yes, you will work with your kids, but what will you do for a job?" she badgered.

"I will be a stay-at-home dad," he said, realizing she wasn't getting it.

When she told me that story, I had to wonder which one of them had the communication disorder. He will work with his kids. Period. That's work. I love that not only does he know that, it's what he wants as his vocation. Couldn't be prouder.

April is Autism Awareness month. I am aware that Rojo has Autism Spectrum Disorder. I am aware that that might make being a parent, let alone the one that stays home, difficult, if not impossible. I am also aware that Rojo has a solution in place.

"Mom, when I am married and have five sons, you will live with us, and you will help me with the boys. We will have a van and we will take the boys in the van to Dairy Queen every day. We will get vanilla milkshakes with red spoons. Don't forget. We will just say, 'Come on, boys, get in the van, let's go get ice cream!' Don't forget mom. Don't forget about the van. Don't forget to help me with my five sons."

Just different.

Monday, April 26, 2010


Had a dream the other night that I was trying to light a Mary at someone else's house, but it wouldn't light. I  looked more carefully and noticed it was not a candle, but a statue. My hand then bumped it and it fell over, but didn't break. I looked over at the person whose house I was in and said, "I'm sorry." They said, "It's okay." I then picked it up and found a small wick at the top of the statue, and was then able to light it.

Sent this dream off to my favorite dream interpreter, and she replied back that I was both the person trying to light the Mary, and the woman whose Mary was getting knocked down but not broken. And it was only through forgiveness that it/I/She was able to light.

Been thinking so much about that dream. No matter how many times I hear (and say) that our dreams are all aspects of ourselves, I still tend to think of them literally. In the dream I really wanted the forgiveness of another, but in my subconscious, I want the forgiveness of myself.


* Photo from:

Sunday, April 25, 2010


Put it out to the universe that I was toying with giving up writing entirely. Some cyber stalking, gossip, misinformation and a general sense of why bother? had stolen my mojo. As is the universe's perverse way, I learned three pieces I'd written would all be published within a month of each other. Not sure that means I'm supposed to keep writing, but pretty sure it means I'm supposed to go deeper with the question.

So, if you don't have your fill of me yet, you have three opportunities to gorge! Ironically, the very first place to publish me is in the Get and Agent magazine put out by Writer's Digest. It is available now on news stands (I'm thinking places like Barnes and Noble would have it).

A poem I wrote was published in Rose & Thorn Journal, a great online journal you should all be subscribing to!

And as I've already mentioned, I have a piece in the new anthology, Fearless Nest. The book looks at motherhood as a path. I'll give that a big amen. I've been re-listening to the Eckhart Tolle and Oprah podcasts they did a couple years ago on A New Earth. Life changing, I'm telling you, and even better the second time through. Funny what stands out to me this go round, versus what I glomed onto last time. This time I heard Eckhart say, "If you're doing motherhood consciously, that is your practice. You need no other spiritual practice."

Okay, thanks for indulging my ego!

(To read more about Fearless Nest, click the link. Thanks!)

Friday, April 23, 2010


The Portland Smoothie Company is open for business! If you live anywhere in the Portland area, get yourself down to SW 3rd between Stark and Washington, and order up a yummy smoothie from my friend Jennifer! The cups are compost-able! The smoothies are vegan! Everything is delicious and nutritious and all-around wonderful!

Wednesday, April 21, 2010


I think that half the reason STM got his gluten intolerance diagnosis, is so I'd be motivated to shop at New Seasons. All my best "meetings" happen there, "coincidentally." First it was with Friends 1 and 2 about getting a dog for Rojo (and we all know how that turned out) then yesterday I ran into the one person I most needed to run into at that exact moment, "J."

Monday we had our IEP meeting to determine Rojo's eligibility. I'd been dreading it and bracing myself for weeks. STM said he considered it an "errand." I didn't know whether to love or hate him for that attitude. I loved that he was able to detach from it, consider it something that needed doing, and wasn't in knots over it like I was. Part of me really wanted him worried sick right along with me.

Really glad STM was there, however, as he quickly moved out of "errand" mode into kick ass mode, and was the hero of the whole thing, calling BS and being assertive when I was flattened and stunned by the complete bureaucracy and dehumanization of the process. I won't even go into all the gory details, suffice it to say I left the meeting too sickened to even come home and drink. That's how bad it was.

But. There was one person there, the OT, who hadn't even laid eyes on my son (yet was reporting on him, don't get me started). She went home and later that same night wrote us a long e-mail apologizing for the meeting, how she was sorry we focused only on his weaknesses, and how she knew Rojo had many strengths. She explained how she has two sons, one with an IEP and she works in the system, and still finds it confusing and frustrating.

She got it.

Also had two amazing souls from Rojo's school there lending support, wisdom, balance and humor to the meeting.

Have had three more e-mail exchanges with my new best friend the OT, she's recommended books, videos, advocacy programs, given names of people in the system that can be of help, etc. Above and beyond.

So, back to New Seasons. On Tuesday, still walking around in a PTSD trance, I ran into J. She has a son two years older than Rojo with special needs. J. is a crier and when I'm around her, so am I. We stood in the middle of New Seasons yesterday and cried, and laughed, and hugged, and raged, and offered up hope and belief that our sons will be okay, despite the system, despite the BS, despite all bell curves to the contrary.

Because we both believe in angels.

Angels among us.


* Photo from:

Monday, April 19, 2010


Looking for that perfect Mother's Day gift? Look no more! There is a beautiful anthology now available called, Fearless Nest. And a little someone you know just happens to have a piece in it, entitled "A Good Question."

All the essays in Fearless Nest center around our children being our greatest teachers. That's true for all moms, but perhaps even more so when those children have special needs, and that is the crux of my piece. I know that being Rojo's mom has changed me in ways nothing else has and nothing else could.

I'm looking forward to reading all the essays in the book, check out the amazing list of authors and read their bios, then order yours today!

* Photo from

Sunday, April 18, 2010

I am at HOPEFUL PARENTS today, come on over!

Thursday, April 15, 2010


I've written before about the widening gap between typical and non-typical, how as Rojo gets older the discrepancy between what he and his peers are doing gets larger. Much, much larger. Whole days go by now when I'm able to obsess about all kinds of things beyond the gap, and then, BAM, when I'm just sitting there minding my own business, someone/something will remind me.

Because Rojo's been in a small school since kindergarten, with little "turn over," most of the kids are used to him, or quickly become so. He lives in a bubble and we like it that way. An argument may be made that we are not preparing him for the "real" world. We aren't really interested in that argument. We've long ago let go of words like "real," "normal," and "usual."

A few nights ago the weather was gorgeous, the neighborhood school's lawn freshly mown, and there were hours left of daylight. Rojo put on his extra-small San Francisco 49-ers football helmet, grabbed his extra-large calculator and his stuffed Patriot's football I won for him in an arcade, and we headed to the field to play football. Two little league teams were practicing in the two diamonds, so we found a remote spot far out of their way, and in little danger of being hit by a ball.

I brought along the FURminator and a bag to put all the excess hair in, and Flicka and I spread out happily on the grass nearby. Rojo was in a zone, in every sense of the word. Coaching, cheering, commenting, being the band, players on both teams and the ref. Heaven.

One of the coaches ran a drill and had all the kids, third graders I'm guessing, run from the baseball diamond to the far away bench, roughly two feet from the three of us. Some little bastard child saw Rojo playing in the helmet, and decided to announce it to God and the universe. "Hey! That kid is wearing a football helmet! Look, everyone, he's wearing a football helmet!" Then he turned to me and said, "Why is he wearing a football helmet?" I am telling you, people, it was all I could do not to rip him a new one. Every low vibration known to man was mine at that exact moment.

I tightly said, "He's just having fun."

And while this experience didn't set me back for days, or even weeks, like it might have at one time, it did reinforce for me that Operation Bubble will continue through high school. What we've helped to create for him in K-8, a place of acceptance, of tolerance, of understanding and of compassion, is what we are looking for in high school.

Nothing less.

Hear that, universe? Mary? God and all the angels in heaven?

*Photo from

Tuesday, April 13, 2010


It's been awhile since I blogged about my plant, and while it may seem like when I'm desperate for something to post I just go in my bathroom and start clicking away, there's more to it than (just) that.

I listened to Michelle O'Neil who told me I needed to get the poor plant a bigger pot, and to Lori Widmer, who told me while I was at it, go ahead and refresh the ancient soil.

And I did.

And look at that thing now.

The plant has taught me how negativity and contrariness can drag down everyone around.

The plant has taught me how moving closer to the light strengthens and corrects so much. Quickly.

The plant has taught me that cutting off/out what is dead and dying, gives so much more energy for what is new and growing.

The plant has taught me that the crookedest of ways can be made straight.

The plant has taught me to listen to the other teachers all around me, like Lori and Michelle and all the other angels/guides in my life.

It's more than a plant. It's a teacher.

Sunday, April 11, 2010


This is a picture of my cousin, Jane, and me on a rainy, cloudy, miserably un-spring-like day. See that light shining through the window? That's our friend, Mary. Yea, that Mary. That's our story, anyway, and we're sticking to it. And BTW, we have no idea who that other person is in the background there. We'll just call her Carol.

We had lunch with Deb, and I'm sorry she wasn't sitting on the Mary side of the room, because there's no question she's got ol' Mary active in her life, too!

It hasn't been all that long since Jane and I realized we'd both stumbled into Mary on our various spiritual paths. We are grandchildren of the same fire and brimstone Baptist minister, where Mary was considered to be a false god.

Call her what you want, but there she is.


Thursday, April 08, 2010


The New Oxford American Dictionary defines a koan as follows:

koan |ˈkōˌän|
a paradoxical anecdote or riddle, used in Zen Buddhism to demonstrate the inadequacy of logical reasoning and to provoke enlightenment.

A famous koan is, "What's the sound of one hand clapping?"

Raising special needs children is a koan, too, applying logical reasoning to any aspect of them is an exercise in futility. I have often said Rojo is consistently inconsistent and predictably unpredictable. A koan.

And although I'm nowhere near enlightened, I am also nowhere near where I was nearly fourteen years ago - back when I had all the answers. Nowhere near.

So, I'm somewhere along the circuitous, arduous, exhausting, thrilling, worth-every-minute, soul-changing path.

And for me, that's the sound of one hand clapping.

* Photo from

Wednesday, April 07, 2010

Love. from Flicka Link (x3)

Tuesday, April 06, 2010


After twice asking Rojo to go look in the mirror and wipe his chin, he says, "God! I need a mom that doesn't repeat herself!"

Monday, April 05, 2010

"Your vision will become clear only when you can look into your own heart. Who looks outside, dreams; who looks inside, awakes."
Carl Jung

Happy Easter Monday, as some people refer to today!

Rojo is a big believer in the Easter Bunny, Devohn, as some of you faithful and long-term readers may recall. Each year about a month before Easter Rojo starts asking about Devohn, when will he come, how old is he, and can I stay up and take a picture. Darned if I don't fall asleep year after year before Devohn comes, and I miss the photo op.

This year Devohn left a small stuffed version of himself in Rojo's Easter basket. Rojo was over the moon. "Look, Mom, look what Devohn left! He left himself he's right here! This is Devohn!"

Rojo hugged and lugged Devohn all over the house Sunday, and slept with him cradling his neck like one of those airplane pillows.

At least three different times throughout the day Rojo would stop what he was doing, look up at me and say, "Mom, this is a great Easter. I'm having a great Easter. Thank you for my great Easter."

At one point, mid morning, after the Easter egg hunt and before the family dinner, he said, "Mom, I am going to pray for you every day." Then he went back to what he was doing and I tried to go back to what I was doing, but I couldn't quite, because knowing he was going to pray for me every day felt like a blessing of the highest kind. And whatever you were doing before you received such a blessing doesn't really matter that much anymore after such a blessing.

Saturday, April 03, 2010


What do the Dixie Chicks, Woohoo and Rojo have to do with each other you ask? Ah! Yes! Well, you see, Amber at Believing Soul burned me a mixed CD, which I more than love, frankly, I'm fully obsessed with, and on that CD is a song by the Chicks.

"Landslide." I have listened to it approximately 2,148 times since she gave it to me mid-March. And each time I do, I think of Woohoo and Rojo, and I think about how they're getting older, and I've built my life around them. I am getting older, and the seasons are changing, and some days I am handling that better than others. In two years Woohoo will be away at college. C-O-L-L-E-G-E! In two years Rojo will be turning sixteen. S-I-X-T-E-E-N! And it was JUST Christmas and it is ALMOST summer, and as Rojo tells me everyday, "Time flies by." Yes, if the seasons aren't changing, they soon will be.

LANDSLIDE, The Dixie Chicks
Lyrics by Stevie Nicks

Oh, mirror in the sky, what is love?
Can the child within my heart rise above?
Can I sail through the changing ocean tides?
Can I handle the seasons of my life?
Well, I've been afraid of changin'
'Cause I've built my life around you
But time makes bolder, children get older I'm getting older too, well

Friday, April 02, 2010

Thank you for your awareness.


Thursday, April 01, 2010


I recently read this lovely book, and really appreciated the perspective Kathy Bolduc has. She is further along the path than I am, and that I found to be very helpful. I think many of you will find it helpful, too, both from a spiritual and a practical standpoint. Below please find our interview:

1. What prompted you to write this book?

I’ve been writing about my spiritual journey with Joel for almost 20 years. Writing has been my way of making sense out of something that on the surface makes no sense: a beautiful boy with a damaged brain. I’ve been in a wrestling match with God for all these years – like Jacob, wrestling the angel, it has impacted my life in a significant way. It’s ironic—like Jacob, I have a damaged hip (literally! From a snow-shoeing injury!). But I’m also on a first-name basis with my God, because I’ve spent so much time with Him.

2. You say in the introduction that this is not a book about a parent’s immersion in autism research, or about a child’s recovery from autism. Do you feel this might keep people from reading the book?

I hope not! I don’t know about you, but I get tired of researching therapies and reading about other parent’s stories of “cures” for their children. It’s not that I don’t research, or that I don’t pray for healing for my son. I do. I’ve spent a lot of time on both. But I can’t let my entire life be circumscribed by that mentality—that my son is not “whole” if he is not “cured.” I remember watching a video years ago. It was called “Come Back, Jack,” and it was about a family’s struggle to heal their son of autism. It was beautifully done, and it won several awards. But I came away from it thinking, “I wonder what will happen to this mom and dad if their son is not cured? How will they survive?” That video was instrumental in helping me realize that I had to find another avenue to come to acceptance of my son Joel, just as he is, autism and all; behaviors and all. Then I could continue the research for therapies, etc. But only after coming to a place of acceptance, first. By the way, the producer of that video, Robert Parrish, recently wrote a book entitled Embracing Autism. His son was not healed of autism. But Robert found his healing in accepting his son, just as he is.

3. You write not only about Joel’s melt-downs, but about your own. What have you learned, in living with Joel’s autism, about dealing with intense emotions?

I’m not proud of my melt-downs, but let’s face it. Parenting a teenage boy is hard enough—add autism and an anxiety disorder to the testosterone, then add a menopausal mom, and you have a combustible situation! The amazing thing is, every single time I reached the end of my rope—every time I said (yelled, growled, snarled…), “God, I’ve had it. I can’t do this anymore. I give this situation to you. I give Joel to you”—God intervened. Every single time. Sometimes He sent me a person. Sometimes He gave me a Scripture. One time He arranged a trip to Palm Desert, California (you’ll have to read about it in the book!). Often He filled me with an overwhelming sensation of peace and calm in the midst of the storm. Now, whenever I feel like life is careening out of control (as we prepare for Joel to move out of the house this coming spring, anxiety tends to be an issue) I remember and re-call those situations when God intervened.

4. It seems as if Joel has been a spiritual teacher for you. What is the most important lesson he has taught you?

I think the most important lesson Joel has taught me is live in the present moment. Because he was unable to sit still for more than two minutes as a kid, Joel and I spent a lot of time at a county park near our home. It’s called Parky’s Farm. When we were at Parky’s, Joel was perfectly content. He could wander around freely. He’d chase the geese, throw stones into the pond, watch the clouds, be mesmerized by wind blowing through the trees. He was totally, 100% present to his surroundings. Me? I’d be going through my mental list—groceries needed, dinner to be made, how many piles of laundry were waiting in the basement, the friends I’d like to be meeting for lunch, etc. I hardly saw my surroundings! Gradually, though, over the sheer number of repeated days at the park, I came to see the beauty in Joel’s way of being. He was living in God’s time—Kairos—while I was living on clock time—Chronos. Kairos started looking more and more appealing to me. So I began to relax, to let myself experience walnut leaves fluttering to the ground, to see clouds breaking up and re-forming before my eyes. I am a student of meditation, and have been since before Joel was born. Suddenly, I realized that I could meditate as I walked through the park, with my eyes wide open! Blood pressure drops, breathing slows, muscles relax, and the peace of God envelopes you. Truly amazing!

5. Autism impacts the entire family system. We learn a little about Joel’s two brothers in the book, but not a lot. Can you tell us about their relationship with Joel today?

I studied disability’s effect on the family system in grad school, and I learned that siblings of children with disabilities definitely get the short end of the stick in a lot of ways. A friend of mine calls them “second bananas.” So often, the child with a disability gets the lion’s share of the attention. We sought out some family counseling when the boys were young, because it was obvious by one son’s acting-out behavior, and the other’s withdrawal, that something needed to be done. The counseling was very effective. It’s amazing how powerful it is to get pent-up feelings out into the light of day, especially when you have a nonjudgmental listener to referee the sessions. The other side of the coin is that sibs of children with disabilities often express a great deal of pride in their disabled brother’s or sister’s accomplishments, because they realize the challenges they have overcome every single day. These sibs develop an ability to look past a person’s outer wrappings to discover and admire the person within. When Justin was 9 or 10 he said, “I think God gave Joel to us because he knew we would take extra good care of him.” That was pretty sophisticated theological reasoning for a 10 year old! I think both of my guys are better people for having grown up with Joel. I think they are more compassionate, thoughtful men. My middle son, Justin, and his wife Elizabeth, often spend the night with Joel when my husband Wally and I go out of town. They enjoy taking him to the park or to the zoo, getting pizza and watching a movie. Joel adores Elizabeth. He’s constantly saying “Elizabeth’s my sister!” Joel’s always been a sucker for a good-looking woman! We’re thankful to have our son Matt back home. He’d been out on the west coast for the past 7 years, so having him nearby again is fantastic. Joel enjoys hanging out with Matt and his dogs—they go for hikes in the woods behind our house.

6. You end the book with a chapter entitled “Letting Go,” which is something all parents of children with autism will have to do sooner or later. You write, “There is a world out there for him to explore, people to meet, experiences to enjoy.” How is this process going?

We’ve found what we believe is the perfect place for Joel to live. It’s a community of choice for adults with autism, called Safe Haven Farms ( , and it’s located on a gorgeous 68 acre horse farm just 45 minutes from our home. It’s a brand-new community, and my husband and I got in on the ground floor of the planning stages. Wally’s on the board, and we’re both on the parent’s committee. There will be four houses to begin with, with four people each—everyone has their own bedroom and bath, with a big common area and kitchen in the middle of each house. The “farmers” will grow their own fruits and vegetables, which they will eat as well as sell at local farmer’s markets. They will grow flowers for sale and for craft items, as well. There will be all sorts of animals, including horses, and a therapeutic horse-back riding program. The residents will help care for the animals and the grounds. There will also be a day-habilitation building with a therapeutic arts program, a learning center, a sensory room, and a community room. Eventually, we hope to have an indoor pool as well.

As excited as we are about the opportunities at Safe Haven Farms for Joel, it’s a roller-coaster of emotions, thinking of letting him go. As you know, raising a child with autism is an intense experience. Joel’s leaving is going to rip a hole in the fabric of our lives! But we believe that this is the right thing for Joel, and the right thing for us. Wally and I have always had a dream of running a retreat center. We recently found the perfect place—a mini-farm not far from Safe Haven Farms. We purchased the property last year, and are in the process of renovating, dreaming, and planning. We keep telling ourselves that we will see Joel every week—that we will have him home for regular overnights—we will take him to church—we will go on outings with him. It’s not like we’ll never see him again! But we still tend to get teary-eyed every time we sit down to talk about his leaving. It’s going to be hard!

To order your copy of AUTISM AND ALLELUIAS, go to Kathy's website
or Amazon.

Kathy is doing a webinar on Thursday, April 8th, at 2:00 PM EDT. Join her; Rev. Bill Gaventa, editor of the Journal of Religion, Disability & Health; and Ginny Thornburgh, program director of the Interfaith Initiative, American Association of People with Disabilities for this presentation on autism and disability ministries. The panelists will address:

• The gifts children and adults with disabilities bring to our church communities
• The transformation that can take place when we open our hearts, minds and doors to those who live with disability
• The steps we can take to become more welcoming to people with disabilities and their families