SUMMIT


The five of us (four humans and Flicka) climbed to the top of this today, Black Butte. Truth be told we drove halfway up, and climbed the rest. Truth be told it took us nearly two hours. Truth be told there was a lot of complaining and "I can't do this..." But. We. Did.

We climbed a mountain, or more accurately, a butte, but we climbed it.

We climbed it.

View from mid-way up - the Three Sisters.

View from the top.

View on the way down.

Success.

* Top photo from www.biocrawler.com

WHY DO I DOUBT?

I had a check to deposit and Rojo likes to use the ATM, so off we went.

He punches in my PIN.

He punches in  a series of Yeses, Nos, and finally we come to the amount to deposit. I am holding the check, he hasn't laid eyes on it.

"Put in $72.36," I say.

He stalls.

"7-2-3-6," I repeat.

He doesn't move.

"What's wrong?" I finally ask.

"I'm going to put in $72.35," he says.

I start to argue, not wanting to enter the wrong number and mess everything up, but get the urge, instead, to re-examine the check.

Don't you know it, the check was for $72.35.

YOU ARE WHAT YOU EAT??


Rojo looked at the weather forecast on the Weather Channel (something he does several times a day) and declared, "Summer worked! It scared the rain away!"

We have had rain.

And rain.

And rain.

And rain.

Cold and grey rain, not summer showers. The weather men have been calling this Junuary.

I am a born and bred western Oregonian and can take a LOT of rain, but what we've had has been biblical.

But now summer has "worked" and we are enjoying perfect weather here in the Pacific Northwest.

Rojo and I are outside all day every day, for the most part, and we're tweaking his ADHD meds so they wear off by noon, making him hungry. It's working. He's eating like a horse, but wants only junk food. We're forever in negotiation about that. "You can have __________, after you have ___________. I want you to have real food. I want you to gain weight!"

Finally, after about the 25th round of You-Can-Have he said, "Be nice to my weight! Do not hurt my weight's feelings!"

Not enough can be made of the fact that he gets he is not his weight. He is Rojo. His weight is what it is. He doesn't want me to hurt his weight's feelings.

And neither do I.

And I saw the river

over which every soul must pass

to reach the kingdom of heaven

and the name of that river was suffering: -

and I saw the boat

which carries souls across the river

and the name of that boat was

love.

- Saint John of the Cross

* Photo from www.thegreatescape.org

PERSONAL




When I began memoir writing four years ago, I had one thing holding me back: how do we write about those we know and/or love, without hurting them? Even if what we write is kind and true? Is it fair? Is it our story to tell? All the places where our lives overlap, how much is ours?

Anne Lamott says she writes several concentric circles away from the core of her life - she does not write about the most intimate and personal details. One may argue that after reading her writing you can't believe it gets several shades more nitty gritty than that, but apparently it does.

Other writers have argued that the more personal, the more universal (and I agree), and that the truth is the important thing - freeing it. The thing is, what's personal to me affects more than just me - even my thoughts are not solely mine, and the truth? Whose truth?

A big reason I decided to pull Unstrung was that while I felt it would help a lot of people, I felt it would hurt at least two, and as Hope Edelman says, "Sometimes the professional gain is not worth the personal cost."

I just finished reading one of the books on my summer reading list: The Journal Keeper. To me, it is one of the best examples of a deeply personal story, that keeps it about the author. While there are things I'm sure her husband would rather not be in print for all eternity, she maintains his dignity at all times - when they have problems, it's her perception, reaction, evolution that is at the crux of the writing.

As a writer this book helped answer a big question that has been holding me back for four years, and as a woman this book helped answer about a million other things that float through my brain at any given time. For a deep, satisfying, provocative, pleasant, want-to-read-all-over-again book, this is it.

NO SHOW


So, I went to the reunion, and Someone I Once Knew was not there. This reunion is for the school where I used to teach before Woohoo was born, and is held every year, and each time I've gone, SIOK has been there. Not this time. I'm flooded with relief and guilt - just sure she somehow found my blog, read it, and didn't come because of that. Another side of me says,  "Make no assumptions." Then there is the side clamoring, "No accidents." I feel guilty for sharing our personal story on the Internet, yet the tugging emotion is that maybe it was helpful in the overall scheme of things, regardless of whether she read it or not.

I don't know.

What I do know is the 20 or so of us that were there, ranging in ages from 47 (love being the youngest at something) to a good 77, sat around a long table and gave our reports for the year. Many told of their grandchildren, how old they are now, what line of work their kids are in, who has graduated and who has gotten married. The easy stuff, and believe me, the stuff I was eager to hear.

Wasn't until one of the people seated at the far end with me had her turn and shared that her six-year-old granddaughter only had two more treatments for leukemia, that things went from Level 1 to Level 10 in a hurry.

I shared that we had gotten a retired guide dog for our son with special needs, and that most of my life was consumed with the caring, planning, advocating and recovering for and from his needs. Turns out the man sitting right next to me (that I didn't know - he left before I came to the school), started his career in special ed. He used to work at one of the local hospitals training doctors to be more compassionate and humane in dealing with parents getting diagnoses for their kids. Straight to heaven.

I talked to the woman whose granddaughter was at the end of a two-year ordeal for cancer, and learned that her grandson (younger brother) was showing signs of autism. The grandmother (retired teacher) could see the red flags but her daughter was understandably overwhelmed with the needs of her daughter, and was not quite there yet. The grandmother asked me a bunch of questions to which I reluctantly said yes, yes, yes. How do you tell someone that yes, it sounds as though their grandson has autism and as soon as their daughter is out of the woods, they can join that club, too?

There is suffering: First Noble Truth.

What people say when their turn comes up to report on their year is not all there is to the story.

I believe, now, that SIWK and as some of the commenters pointed out, I would find many things we have in common as parents, as women, as fellow sufferers, if we moved our egos and pain bodies out of the way and let the understory emerge.

Be kind whenever possible.

It is always possible.

Tenzin Gyatso

14th Dalai Lama of Tibet

Dear Someone I Once Knew,

I will see you tomorrow at the reunion, and I will remember how we were pregnant with our daughters at the exact same time, and then two years later, our sons.

In those early years we tried to get together with the girls, but by the time the boys came into the story, we were on such divergent paths that it was hard then, impossible now.

Tomorrow we will hug, you will say how great it is to see me, how you think of me all the time. But you will not ask about my kids. You will tell me all about yours - the daughter too smart for her age, skipping a grade and no longer my daughter's peer. I have heard that story, but you will tell me again, how advanced she is and how school is just not challenging for her.

I will recall my years of teaching Talented and Gifted and pull out some dusty compassion for what I know to be a difficult row to hoe, too, the likes of which I cannot imagine.

You will tell me about your son, also brilliant and a gifted athlete, a year ahead of my son in school, although only a month older. He is darling. Popular. Keeps you busy, busy, busy running him to all his friend's houses and his sporting events, the likes of which I cannot imagine.

You will tell me about all the places your family will go on vacation this year, all the fun things you like to do, the activities you enjoy, the way your kids are natural travelers and how great it is that summer is finally here so you can all spend more time together, the likes of which I cannot imagine.

You will tell me how you cannot believe in four short years you will be an empty nester, how you and your husband are looking forward to an early retirement and trips abroad, the likes of which I cannot imagine.

You will not say, "So how are your kids?" I know it's not because you are callous. I know it's not because you don't care. I know it's not because you are selfish. I know it's because you don't think about how every word out of your mouth is fresh salt in my old wounds. I know you don't know how it is you, and only you, that has this effect on me - we were doing this together, and I broke the pact, by having kids with differences.

It's not your fault. You know your world and I know mine, and we have both met many comrades in our respective worlds, friends that get us through, friends with less history, friends that didn't break old pacts but made new ones: to imagine.


* Photo from www.obit-mag.com

LOST


Dreamt last night I was in a road race (in a Honda Element) with the most unlikely co-pilot (someone I can loosely define as a friend). Within a few miles of the road race I took the wrong turn and was hopelessly lost.

Poof - gone was the co-pilot, gone were the road signs, gone was every sort of navigational help. I was actually driving in and through buildings I was so lost.

Pretty sure the dream has something to do with how I'm feeling about summer vacation, which starts at noon today for Rojo - Woohoo has been out over a week.

I don't have a road map. I don't have a co-pilot. I don't have a lot of road signs showing me the way through to September.

That's what I fear, but the reality is I do have a road map - a calendar with plenty of things to break up the three months. I do have a co-pilot, several, actually, STM, Flicka, Above and Beyond, babysitters, aides, friends, relatives. And I do have the road map: love.

TOP 10 BOOKS ON MY SUMMER READING LIST

UNBIND

Under every moment of anger is an enormity of sadness,
 and under that a sea of compassion.     - Stephen Levine

The Greek word for forgiveness means to unbind.

Un-bind.

Be not bound.

Amen.

* Photo from www.chinesesymbolsmeaning.com

FORGIVENESS


First AbFab Geek recommended I read it, then my friend Toeless sent me the book, so I finally sat down one day and started it. I'll be honest with you, the subject of Rwandan genocide was one I was happy to avoid, but Toeless and AbFab both said I would love it, both said it would be life changing, and both have my best interest at heart, so I trusted them and dove in. I barely came up for air.

The book is amazing for many reasons, but what struck me the most was Immaculee's ability to forgive. I am telling you, if you are struggling to forgive someone, this book will help put it all in perspective. If she is able to truly forgive and find peace, there is hope for the rest of us.

Immaculee has two other books which I just picked up and can't wait to start reading, and the third one is all about Mary.

Say no more.

GRANDSONS


My dad died just a few weeks before Rojo was born, and nine years before Kunga came along, and yet there it no denying his role, his presence, his spirit when you get these two "brothers" together.

Kunga has been dreaming about my dad lately, waking up and saying he misses him. He spontaneously told both Woohoo and me this, too.

"I miss my granddad," he said.

"Do you remember him?" I asked.

"Yes. I remember him."

"Tell me about him," I pressed.

"I didn't know him, he died before I was born, but I remember him," he clarified.

And there isn't a doubt in my mind that he does. Nine years together on some other plane is hard to forget.

Rojo, who had to be told by a newly five-year-old that his shoes were on the wrong feet, said one profound thing after another this weekend as we spent our time in my father's old house - indeed, the house in which he died.

STM simply asked, "Hey, Rojo, what time is it?"

"You'd know if you had harmony in your soul," he said.

After playing with a ball in the back yard, Woohoo said, "Rojo, where did the ball go?"

"I affected your energy and now you can't find it."

My dad was a piece of work, but after fourteen years only the fond memories come to mind now when I think of him - there's been time to heal. The "brothers" only know the funny stories, and there were plenty. They have a divine connection to a man that is their grandfather, a man that affected their energy.

A man whose soul has finally found harmony.

Amen.

MANIC SCREAMING

We should make all spiritual talk

Simple today:

God is trying to sell you something,

But you don't want to buy.

That is what your suffering is:

Your fantastic haggling,

Your manic screaming over the price!

From the book I Heard God Laughing, Poems of Hope and Joy

Renderings of Hafiz by Daniel Ladinsky

THE MAGIC BENCH


Wrote recently about playground miracles. Am almost embarrassed to tell you this, but they just keep happening, and happening, and happening. Feeling like it's being revealed to me why Rojo is so insistent that he, Flicka and I go to the park every night: we have work to do.

Rojo performs his magic on the play structure, delighting the 4-8 year-old set, and Flicka makes it possible for me to meet people I would not otherwise meet.

Other day Rojo and I couldn't find any other kids to play with at Park #1, so we walked down to Park #2. There was a mom and her daughter swinging on the only two swings. Rojo and I took the teeter-totter. Pretty soon the little girl left the swing and came over to us. That turned into her teetering her 7-year-old self with Rojo's tottering nearly 14-year-old self, and me trying to balance the two out, with some degree of success.

Off the teeter-totter and on to tag, the mom and I were left to talk. She started asking about Flicka, and next thing I knew I was telling her all about how we got her. That story has a couple of versions, the just-the-facts one, that's not bad, really, and the woo-woo one complete with every no accident detail. I went for version #2.

"That's what happens when you put it out into the universe, the universe rises up to enfold you" she said.

I knew I'd found a friend.

We talked for two hours, don't you know it, New Friend has a child with special needs. We eventually moved back to Park #1 when my friend, Above and Beyond called to say she'd brought the ice cream "truck" down there. I introduced New Friend to Above and Beyond, and after I left, they did more talking and sharing of resources.

The other day I was at Park #1 and I noticed something going on with each of the kids that were chasing him in a rollicking game of hot lava monster. All these years I've been bringing him to the park thinking he was the only one with special needs, and just assuming everyone else was neuro-typical.

Can't believe this far into the game I still don't have the Make No Assumptions thing figured out.

One thing I have  figured out is that Rojo, Flicka and I will continue to go down there and play, as long as there is a bench to sit on.

And to listen.


* Photo from: terraformearth.files.wordpress.com

FOR GOOD

"I've heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don't know if I believe that's true
But I know I'm who I am today
Because I knew you..."

From the song "For Good" from the musical, "Wicked"


I do know I believe that's true.

Been thinking so much lately about friends, and without exception, they've all changed me for good, and for good.

Eavesdropped today on two elderly women talking about hearing aides. "Well, Sue just had so many problems with hers, I don't know, I don't think I'll get one," said the one with a freshly coiffed grey bob.

"Oh, that's ridiculous," said the one with impossibly red hair. "What kind of problems? What do you mean problems? She's probably just not using it right! You know you have to get it in just the right place in your ear or it doesn't work."

"Oh, I don't know," said Grey Bob, "Maybe if I get to a place where I really need one, I'll do it."

"You ARE at that place," said Impossibly Red.

I instantly vowed to be Impossibly Red, and not Grey Bob someday. Maybe even starting tomorrow.

A tricky thing, though, honesty. Not much good unless it's coming from a place of love and requested. I've tried to force it down other's throats. I've tried it at the top of my lungs. I've tried it with righteous indignation. Doesn't work.

What is our sacred contract with each other, to hold space? To listen? To observe? Just to love? To call BS on? To declare, "You ARE at that place?" What's the role of a friend? Does it depend on the friend? Probably.

Consider yourself warned, however, if you ask me what I think, I'm likely to tell you.

WELL, THEY GOT THE FIRST PART RIGHT ANYWAY...


Got an e-mail from a friend with a special needs child. They'd had an incredible conversation about God/Mary/Jesus. Deep. Meaningful. Enlightening. In about 10 words.

Had a conversation with someone yesterday about ego. For me the definition of ego is our false self - who we think we are. Thinking being the operative word. The ego loves to think. Think, think, think, that's what it's all about. As a society we value thinking, because we equate it with intelligence, and we equate intelligence with superior - the more intelligent, the better.

It is my firm belief that kids with special needs are here to help us break from our own egos, by showing us the way. We use all kinds of disparaging words to describe people with lower "intelligence," because A) we define intelligence in an antiquated way, and B) it makes our egos feel better to be superior to others (it's also socially acceptable to do this, but that's a whole other blog post).

These kids are special. It's apt that they be called special. As for the needs part? Hmmm... they certainly have specific needs, which are special, but the special part is really in their gifts, not in their lack. If they lack anything, it's an ego.

And that is special.

To listen to Eckhart Tolle talk about ego and thinking, click here.

SLIP

An interview with author Tanya Savko

I'm pleased to share a wonderful book with you, Slip, by my blog and real-life friend, Tanya Savko, from Teen Autism. You could say it's a book about autism and the coming to terms with it. You could say it's a book about one family's transitions and transformations. You could say it's a book about the universal message that love heals. No matter what you say, it's a beautifully written book, by a beautiful woman with a beautiful story to tell.

1) Tell us about the actual writing of Slip, how long did it take you to write. How does a single mom with more than one job and more than one special needs child, find time to write?

I started writing Slip almost six years ago and finished the first draft within a year. I spent the next three years working on subsequent drafts and editing. It went through some changes! At times I was able to focus on it consistently, and other times I had to set it aside for a while, just depending on how full my life was at the moment. My usual writing time is at night, after my sons are in bed - if I'm not too exhausted by then!

 

2) Tell us why you decided to fictionalize your story, rather than writing straight memoir?

I chose fiction rather than memoir for a few reasons. Mostly, it's because I just love to write fiction. I love creating characters, getting to know them, and seeing how they develop. Although the main ideas of Slip are memoir-based, the characters often say and do things differently than their real-life counterparts did. And in that way, it was more cathartic for me to write a novel instead of a memoir.

 

3) Tell us about starting your own publishing company and self publishing. What made you decide to go that route, and what's your advice for writers out there looking to publish?

Whew! Starting my own publishing company was even more of a labor of love than writing the book itself! It's considerably more involved than having Lulu or some other company publish your book, which is actually what I would recommend to anyone wanting to self-publish. Don't do it the hard way like I did! I don't regret it, though, because I had my reasons for doing it that way - namely, because I wanted to start my own publishing company. It had been a  childhood dream of mine to publish books, and not just my own (eventually I would like to publish the work of other people). Another motivating factor was that I had been working with another company, and the typesetting job they did was terrible. But starting your own publishing company is much more labor-intensive (not to mention a lot more expensive). So if you're not driven to start your own publishing company, my advice would be to self-publish via Lulu or something similar.

 

4)  In the book Andrew, the father, has a four-year relationship with a woman named Brooke. We love and hate Brooke, we love that she loves Andrews kids, we hate her drinking and drugging and violent temper. Did you have a "Brooke" in your life? If so, did you find it as hard to end the relationship as Andrew did? Why or why not?

Interestingly, Brooke is probably the least fictionalized character in the book. There was definitely a "male Brooke" in my life. It was very difficult to end the relationship, and I dragged it out much longer than I should have. I think it was just during a really vulnerable point in my life - a lot of rationalizing went on. You come out of a relationship like that feeling chaotic and shell shocked, very unsure of yourself. It was easier for me to write about it in fictional form - happening to someone else - than memoir.  

 

5) The Andrew character recovers from depression and OCD, are these issues you've dealt with, and do you think you can ever fully recover, or is it a matter of them going from debilitating to manageable?

Yes, I have been diagnosed with depression and OCD. Both have been present throughout my life in varying degrees; the worst was 12-13 years ago, during the time that my sons were toddlers. I was on medication for almost two years, and that helped immensely. I think, for me anyway, the most debilitating effects of those conditions were largely situational. I was completely isolated, caring for two toddlers with special needs, and in an unsupportive marriage. Several things coincided that helped me to get better: the medication, going back to work, and my sons being enrolled in therapy programs. These days, both my depression and OCD are much more manageable, although some milder symptoms remain with me.  

 

6) You make the mother, Erica, a bartender with a family history of alcoholism. Do you think that was Erica's way of exerting control over alcohol in her life? If so, did it work?

With Erica, I tried to portray the effects of childhood abandonment in one's adult life, in which control issues are often present. I think it was a subconscious defense mechanism for her to exhert control over the alcohol in her life by being a bartender. In that sense, I think it did work for her, especially since she was the manager. She is controlling in other areas of her life as well; she has a hard time on the few occasions when she's not calling the shots.

 

7) Tell us more about the title of the book, and what advice you have for other "SLIPS?" (Singe, low-income parents.) 

As for the title of the book, although the main reference is the acronym "single, low-income parent," there are several other references to the word "slip," such as "one slip in a small town and everyone knows" and asking how does a child "slip into autism." I had also thought of including a Freudian slip, but that probably would have been too much!

 

My advice to other "SLIPs" is to a) find emotional and physical support, whether it's in the form of extended family, friends, church, or respite care, b) find financial support in the form of government programs - they are there for a reason, and c) find spiritual and mental support, by taking small steps to achieve your dreams and goals, taking care of yourself, exercising, and meditating.

8) Now it's your turn, Tanya - what do you want us to know about this book that I have not asked yet?

For years now, we've been saddled with statistics about autism and the divorce rate. I wanted to write a story that clearly illustrates that the link isn't always there, that so many other factors can contribute to a divorce, even when autism is present. Yes, it puts stress on a marriage, undeniably so. But autism should not be a marriage's scapegoat. With Slip, I wanted to look at the underlying causes, how complicated and intertwined they are, instead of just accepting the statistic as the ground rule.

 

To order your copy of Slip, click here.

HELP


Went to see "Sex and the City II" last night with three HOT friends. Same group of us went to SATC I two years ago, same group of us watched Season 6 with tears, laughter and champagne a few years before that. Same group worked on an auction together seven years ago. Same group had our little girls entering kindergarten together almost eleven years ago.

Same group.

My favorite scene in the movie is when Miranda gets Charlotte to drink and share her frustrations with motherhood. Both women recognize how hard it is, and that is with help. They raise their glasses and toast to all the women that are doing it without help.

The four of us have not had "help." But we've had each other.

That counts.

Double.

PERSPECTIVE


We were away for the long weekend - actually, STM left last Monday and had four well-deserved days to himself, and the kids and Flicka and I joined him after school on Friday. STM and I have never sat down and said, "Okay, you do this and I'll do that, and it'll be fair," but over the years we've done the special needs parent dance long enough that we rarely step on each other's toes now. As it is, he gets up early with Rojo and Flicka because he is not even awake at that ungodly hour (5:30-6:00), and is happy to sleep walk through the whole bacon, sourdough toast, praise-the-Lord, kicking, humming, what the BLEEP, morning that is Rojo. That is the time I, too, get up early, but have to myself. I meditate, read from various inspiring and helpful books, and in all ways "get the energy right" for the day - starting with the perfect cup of coffee I brew in my own private coffee brewing quarters. I take over around 7:30 when STM goes to work, but Rojo leaves for school before 8:00. On the weekends STM still takes the first shift, and I come on board later, we switch off throughout the day.

On weekdays I take the afternoon/evening/night shift. I have Rojo from 3:15 - 8:00 when he goes to bed, which although it sounds like more, is an even trade. STM has him unmedicated and super hyper, janked up and in a good mood (Rojo's words to describe himself), and I have him in search of parks and for the most part, tired from his busy day.

When I woke up and heard Rojo singing at 5:59 on Saturday, I couldn't believe my eyes - and feet. STM was still in bed. I decided to get up since I needed to pee anyway, and then I just went ahead and started the morning process I'd been doing in STM's absence the last few days. Rojo sang. Rojo tapped. Rojo hummed. Rojo swore. Rojo praised the Lord. Rojo ate 34 pieces of bacon and two Luna bars. I drank two cups of coffee here and there throughout the process, cleaned the coffee pot, put in a new filter, fresh, cold, filtered water up to the 6 cup mark, scooped out the perfect amount of freshly ground coffee and had it all set to turn on the minute I heard STM emerge from the bedroom. When he did, I pushed the button and was so proud of myself. I let him sit quietly in a chair getting his wits about him while the coffee brewed, and when it was done I put it in his preferred mug and brought it to him.

The next morning, Sunday, when I woke to singing I looked over and the other side of the bed was empty! Yea! My turn to sleep in! I slept another 45 blissful minutes, and when I staggered out to the kitchen my first words were, "Is there any coffee left?"

"No," STM said,"but it's all ready to go. You just need to clean out the coffee pot, put in fresh water, and add the grounds." He was dead serious. He'd thrown out the old grounds and put in a new filter and to him, that was "ready to go."

I laughed.

"Are you making fun of me?" he asked.

"No," I said, "I just love you. You and I are different, and that's what makes us work."



* Photo from: ww.ider.herts.ac.uk/school/courseware/graphics/images/two_point_perspective.gif