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Every year, as I’ve dropped Joseph off at school, I’ve marked the day when excited 6th-8th graders have gathered in the parking lot with their luggage, waiting to leave for science camp. Through the years I’ve tried not to think about science camp much, as I couldn’t imagine Joseph being one of those kids. For one thing, he wet his bed forever, first weekly or so, then monthly or so. Only in the last year has it become an extremely rare occurence. How embarrassing would it be for a preteen to wet his bed in front of his peers? Secondly, I couldn’t imagine someone who isn’t good with change coping in such a new, dynamic environment for four nights and five days.

But last year, Joseph and Blue Eyes attended the 8th grade graduation ceremony and heard the kids’ parting speeches. Many of them spoke nostalgically about science camp being one of the highlights of all their years at school. When he began 6th grade this year and science camp was discussed, Joseph decided that he wanted to go. His best friend, Dallas, was going, and that seemed to make it all ok.

science-camp-3Dallas is a wonderful young man, sweet and smart and caring. The bond between him and Joseph is lovely to see and, though I sometimes wonder why a neurotypical kid with good communication skills wants to hang with a non-neurotypical kid without such good communication skills, I am most grateful for their friendship. Who knows what draws people together? Dallas stutters but manages to get around that nicely — maybe that’s what gives him compassion for Joseph’s challenges. I once asked Joseph if they’d ever discussed Dallas’ stutters. Joseph said, “No. We don’t talk about his stutter or my flapping. It’d be too embarrassing for us both.”

That’s quite insightful, don’t you think?

But I digress. As science camp came closer, I started a major (but private) freak-out: What if Joseph didn’t sleep at night, which used to happen all the time when we slept away from home? What if he got severely constipated, which also used to happen? The reason we bought our old beater of an RV was because it became the one place besides home where Joseph would poop and sleep, and it enabled us to travel. Other than sending mail to science camp, parents were not allowed to communicate with their kids and we most certainly were not allowed to be there. How could I make sure he was okay?

Joseph’s second best friend, Allen, is in his class and is a very high-functioning spectrum kid. Allen’s parents made the decision not to let him go to science camp for the same fears I had: not sleeping and not pooping. I felt deep compassion for their choice as I lay awake at night, worrying about these very issues.

It’s been said that Satan loves it when we don’t ask for help. My fears were in charge until I finally emailed Joseph’s teacher, expressing my worries. She wrote back that the camp nurse could check in with Joseph confidentially to make sure he was pooping, and that I could give the nurse an herbal laxative to administer should Joseph need it. She reassured me of the camp schedule and said that she and all the other staff would keep an eye on Joseph to make sure he was doing okay. I cried in private to Blue Eyes, who said that yes, he’d probably be somewhat sleep-deprived, but was that problem important enough to miss this amazing opportunity?

With that reassurance, I let go. Ever since Joseph turned six and declared he was ready for neurotypical kindergarten, he has been the driver for his next steps. He wants a dog, even though he’s scared of them? We got a dog. He wants to create a CD? Our friend has helped him to record several. He wants to be on the swim team, even though he can’t dive? That happened. He wants to stop attending special-needs basketball and instead join the school basketball team? He’s on the team. He wants to go to science camp? Well, good morning, campers!

sciencecamp1Yesterday morning, Blue Eyes went and picked up Joseph and some of the other kids to bring them home. One of the boys looked like he hadn’t washed his face since he’d arrived at camp. The boys were so tired they could barely speak. Joseph, though obviously sleepy, was the most-rested kid in the car.

Expectations are choosing, in the present moment, to be disappointed at some future time. With this in mind, I worked with myself not to expect Joseph to tell me all about his experience at once. The vision I tried not to envision was sitting around the dinner table that night, hearing his camp stories.  Joseph doesn’t like to be pressured to talk (have I mentioned the lack of communication skills?).

But when I got home from work, he was ready to talk. Enough. And at dinner, he talked some more. We heard the camp songs, the camp rules; we learned about the bird sanctuary and the night hikes. We heard about the running jokes in the cabin he shared with his classmates, the very boy-behaviors at night (think stinky gas) and the unique characters on the camp staff. We got him to bed at a decent hour and he slept 10 1/2 hours.

And yes, he pooped while he was at camp. Every single day.

He and Dallas have decided they want to go there again this summer for camp. Though I am already noticing a little worry (his teacher won’t be there; who will look after him with such diligence?), I know that, this time around, letting go will be easier.

Several years ago, Joseph turned to me out of the blue and said, “You know, Mom, I won’t be living with you forever.” When autism is in the mix, parents aren’t sure if this is true. We have to look at questions other parents might not, like can they find work and perform it well enough? Do they have the skills to live independently? Can they live in a way that isn’t isolating, but that offers them friends and, dare I say, a family of their own?

The past statistics are not encouraging, but Joseph doesn’t take those into account. He hasn’t read the autism book and he’s not going to, so who knows where his trajectory will take him? The words of Kahlil Gibran come to mind, and are a most fitting way to end this post:

Your children are not your children.

They are the sons and daughters of Life’s longing for itself.

They come through you but not from you,

And though they are with you, yet they belong not to you.

You may give them your love but not your thoughts.

For they have their own thoughts.

You may house their bodies but not their souls,

For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.

You may strive to be like them, but seek not to make them like you.

For life goes not backward nor tarries with yesterday.

You are the bows from which your children as living arrows are sent forth.

The archer sees the mark upon the path of the infinite,
and He bends you with His might that His arrows may go swift and far.

Let your bending in the archer’s hand be for gladness;

For even as He loves the arrow that flies,
so He loves also the bow that is stable.

Blessings to all.

Professor Temple Grandin, perhaps the best-known person with autism next to Rain Man (who, I remind you, was a made-up character), once commented that we need to keep the lives of our autistic kids interesting. I have pondered this many times over the years, agreeing with her that presenting new and exciting adventures to Joseph keeps him interested, engaged and challenged.

But when your kid has anxiety — which is extremely common for people with autism — it has to be looked at slightly differently. bell-curveOur RDI consultant once drew us a bell curve like the one to the right. The line in the center separated the two sides. To the left he wrote “Productive” and to the right he wrote “Unproductive.” There is a point, he explained, where challenge simply becomes unproductive. While you don’t want to make Joseph’s life too cushy (too far left), you also don’t want to immerse him in events that produce unproductive anxiety (right).

But anxiety is unpredictable and often irrational, so you don’t quite know what is going to push someone over the edge. Like last week, for example…

We went camping. Fun, right? Blue Eyes and I both come from camping families and we have wonderful memories of the adventures we had on those trips. Joseph was excited: we camp every year for a few days so he knew, more or less, what to expect. Blue Eyes had even fixed up our relic of an RV, and we took that along (I happily spent the nights in a tent next to them.)

anxietyThe first morning, anxiety struck. Why? Who knows. Dogs were leash-only, so that was okay. Maybe being out of the routine? Somewhere new? We were in Lassen National Park: Volcano territory. Like a volcano, Joseph’s anxiety built up and exploded out – hot, fierce and uncontrollable.

What we forgot since we last went camping is that campgrounds provide a great view into other people’s lives. There is nowhere to hide a kid who is loudly expressing his fear, resistance and anguish. Think humiliation.

On the other hand, other people couldn’t hide either. We watched happy families with excited kids who were loving — and making the most of — every minute of their camping experience. Living so openly, side by side with typical families, really got to me for a while there. I felt terribly sad.

By the third day of some difficult times, Blue Eyes had a brilliant insight: Part of Joseph’s anxiety had to do with the structure of the day. If we’d done a morning hike and returned to the campsite for lunch without any particular plans for the afternoon, this was perceived by Joseph as a high-stress situation. Whereas Blue Eyes and I looked forward to a few empty hours, our kid did not. He’s not like this at home, but we had to roll with what was happening there. It worked to say, “Let’s take half an hour to rest and then go for a bike ride.” It didn’t work to say, “Let’s do whatever we want for the afternoon.” This helped. A lot.

Looking back, I don’t think I handled the anxiety well. I was irritated. I hated that others could see and hear our troubles. Why couldn’t Joseph just reason himself out of this? Why was he behaving in such a ridiculous way?

But the beauty of reflection is the learning that comes from it. I don’t fully understand Joseph’s pain and I doubt I ever will. But rather than judge him (to take another view of the bell curve: unproductive behavior), I want to feel compassion for him and support him (productive behavior). We are going to get to work on this anxiety, starting with an Ayurvedic specialist who focuses on kids with anxiety.

During one of the low points of the camping trip, Blue Eyes pointed at our sweet dog and said, “That’s our gift.” Then he gestured toward Joseph (who was out of earshot) and said, “That’s our work.”

Paramhansa Yogananda, in a letter to one of his devotees (though I think in actuality all of his devotees), said,

Everybody’s difficulty is different and he or she has to win that test of karma…I will never give up my job about you….Not only will I ever forgive you, but ever lift you up no matter how many times you fall.

This, I believe is the work of us parents, especially those of us with special needs kids or rebellious kids or troubled kids. Our kids come in with their own karma and their own tests. We can’t change that, but we can let them know that we won’t give up on them. We will ever forgive them, ever work with them, ever help them to be all they can be.

Dang, it’s hard. But here I lean on Yogananda again, with these excerpts:

I shall ever be with you and through Divine Mother guard you from all harm, and will constantly whisper to you guidance through your loving self.

So do not become discouraged and tired…

A smooth life is not a victorious life — and I will give you lots of my good karma, so you will get through.

…not only will I invisibly help you but visibly, through many here.

IMG_1977Opening to receive that good karma. Exhaling a big exhale and allowing my own anger, resistance and anxiety to dissolve as I remember, yet again, that this work is much greater than just Blue Eyes and me. The Universe offers unlimited support, if only I allow it in.
Blessings.

One of the trippy things about having a kid with autism is that, unless your kid happens to be displaying autistic symptoms right at that moment, s/he looks pretty normal. This is why having to take my ten year-old, normal-looking son into the ladies’ bathroom is an excruciating process for me.

It’ll be like this: we’re out and about, miles from home, and Joseph or I needs to use the bathroom. So far so good, right? We walk to the facilities and, naturally, they are separated into men’s bathrooms and ladies’ bathrooms.

(Allow me a slight digression. In Australia, they are labeled “Male Toilets” and “Female Toilets.” I always wondered, how do they know the gender of a TOILET? But, as I say, I digress.)

This is where we run into trouble. As usual I will say, “Do you want to try the men’s?” And as usual, Joseph, filled with anxiety, will answer with a resounding “NO!”

Still, every now and then he will actually open the door and stick his head in. Then he’ll pull his head out and say, loudly enough for the poor, innocent man to hear, “I can’t go in there. There’s a MAN in there!” Or he’ll just say, “I can’t! I’m too scared!”

And so, here we go again. Into the ladies’ bathroom, me and my ten year-old, normal-looking son.

Now, Joseph knows full well that it’s weird for him to be in the ladies’ bathroom. Believe me, I’ve tried to shame him out of the practice any number of times. But instead he hurries into the bathroom, rushes into a stall, closes the door, and asks loudly, “Mom! Where are you?”

Once he’s figured out that I am close by he continues his interrogation. “What are you doing, Mom?” “When will you be done?” “Aren’t you done YET, Mom?” Then, just for a little extra entertainment, he’ll start in with, “Mom, there’s another woman in this bathroom! Help me, Mom! Help me!” (This latter statement is because he’s embarrassed to be in there — thanks to me — and doesn’t quite know what to do once more women arrive.)

The good news is, once Joseph starts acting like this, people quickly figure out he’s got a disability and I can show my face again without being embarrassed. So, see? It all works out. Ha ha.

You could say that it’s yet another thing I need to surrender to. You could point out that it’s the practice of building humility through humiliation. But please don’t. I’m just not in the mood to see the longer-rhythm good that could come out of this.

bathroom signWe are on vacation in Oregon. Beyond the horrid days like the one I outlined in my last post, we’ve been truly enjoying ourselves. And THIS is a sign I saw outside an Oregon bathroom at a campground.

Glory be! I LOVE this sign. I want this sign on every public bathroom from here to Timbuktu.

But until that happens, can you do me a favor? If you see some normal-looking kid in the wrong gender bathroom with his/her parent, just smile pleasantly and look the other way. It’s not nearly as bad for you as it is for that parent. You can trust me on that.

Relax — this is not a post espousing Christine doctrines; Yoga Mother is not the type to do that. This is about a more personal kind of crucifixion.

This past weekend was  a very interesting one for our family. We rent out the small cottage on our property as a vacation rental. Usually people come, enjoy whatever they’re here for, and go. Sometimes we meet them and exchange a few words; often we don’t.

This time it was completely different. A man named Eban got lost finding our place, gave up, and then crashed his car heading somewhere else. Blue Eyes picked him up to bring him here and, from that moment on, he was part of our lives. A man in his late sixties, he needed to be driven here and there; he needed emotional support dealing with the car; he came over for meals.

During all this, we talked. He is a psychotherapist and had some really valuable things to say about the autism in our lives.

crucifixion-altarpiece-detail.jpg!BlogIt is a crucifixion, he said: The ego is getting crucified. What is the ego? I’ve heard it defined as the part of us that says, “Yeah, but.”

Yeah, but I didn’t sign up for autism.
Yeah, but everyone else has it so much easier.
Yeah, but I don’t WANT it to be this way.
Yeah, but…(What’s yours?)

Terese and I took our boys to the playground yesterday. Her autistic son scared a little boy by going down the slide right after him, basically pushing him down. His mom rushed over, picked up her son to hug and comfort him, and then took her kids to the lower playground to get away from us. Eventually we went there too, and again Terese’s boy disturbed the younger one. The mom threw Teresa a really dirty look, gathered her kids, and left.

And so another nail got hammered through Terese’s hand. Another sword punctured her side.

Yeah, but I’m a good mother. It’s not my fault my kid acts like that. Why are people so judgmental?

Eban says that it’s all about vulnerability. Look at Jesus, he said: A great master with all the powers in the world, he nonetheless made himself completely vulnerable.

“Yeah, but look where that got him,” I answered (notice my yeah, but).

“Ah, and look what happened after that!” he responded.

The resurrection.

It hurts, this thing called autism. This man who magically appeared in our lives says to let it hurt; to be vulnerable enough to open to the pain. In this way, he says, we can be molded. In the suffering, he says, there is grace. Find the grace.

I don’t claim that autism has the monopoly on crucifixions. Most of us have the so-called grace of something that crucifies our egos! Mine happens to be autism.

And so I wish us vulnerability. I wish us trust that God loves us so much, and knows us so dearly, that S/He gave us our particular crucifixion. I wish us freedom from false identifications (another definition of the ego: The soul identified with the body/mind) so that we resurrect in our full glory as unlimited beings, as children of the light. May we truly know that we are spiritual beings having a human experience.

May we open in surrender.

Into Thy hands, oh Lord, do I commend my spirit.

The body is a great teacher. Mine has been a rather constant, somewhat troublesome body, with something painful happening in it almost all of the time.

Lately it’s been my right arm. Pins and needles through the arm. Massive pain through my wrist and fingers. Writing’s been hard. Sleep’s been harder.

I think that we have much more impact, and influence, on our health than we tend to believe. One night recently, Blue Eyes and I were talking about my arm dilemma and the thoughts/beliefs that might be behind it. He looked at me and said, “You carry a lot of fear.”

In characteristic old-married-person response, I rolled my eyes and told him how far I’d come in getting over that fear. But before I went to sleep that night, I put the question out to the Universe: What is this pain about?

Asking is soooo good to do. On the way to school the next morning, Joseph and I were listening to a recently-purchased CD by Staci Frenes, and we heard these words:

Your grip’s too tight.

That’s it! I realized. My grip is way too tight!

I think back to Joseph’s diagnosis seven years ago. My body and mind curled into a tight fist when the word autism was spoken. I held on through that oh-so-difficult journey, sometimes hanging over a cliff, barely able to grip the edge.

But grip I did.

sword fightRemember the old-fashioned sword-fighters? One steps up to the other, sword drawn, and says, “En garde!” I think I’ve been “en garde” for seven years: Body poised and tight, adrenalin flowing, at war with the medical industry, the school system, the naysayers, funding sources, the co-occuring conditions. At war with autism and its devastating effects. At war with my own stress level and insomnia. Even at war with the war.

Without much awareness around it, I have been wound tight, feeding off a hot suffocating tension, watching and waiting (even in my sleep) for the next battle.

And now? Joseph is nine, about to finish second grade in his typical classroom.  He is navigating his life in his own unique, amazing way. Yes, he still has autism. Yes, he still faces trials and tribulations because of it.

But.

It’s time to relax the fist.

It just is. It simply is.

I am going to open my aching fingers, spread my arms, open my heart…

…and free fall.

free fallEver wonder what it feels like
to free fall?

Nothin’ underneath you
To catch your fall
to look up at a big sky
and feel so small
Ever wonder what it’d be like, feel like, to live life
out of your control?
~Staci Frenes

Free falling is the image I am taking through my life now. It’s only been an illusion of control, after all. How much more fun it is to no longer pretend I have any. To be like a hawk gliding along, surfing circles on air currents, simply present and letting go into the experience. Not a thought about what comes next until it’s there.

Sometimes I’ll thank someone who is working with Joseph and they will respond by saying, “It’s a great privilege.”  To be honest, I have never understood this. But this morning I felt a little charge up my spine: How amazing that I get to help this special-needs kid go through life! Whereas many other parents are stuck with normal, think-inside-the-box kinds of kids, I get this really unique, creative, most unusual child to hang out with.

And I felt it. I felt how great a privilege it is to be Joseph’s mom.

* * *

My arm is getting better.

Interestingly, the soreness has made my right hand unable to grip into a tight fist.

That’s improving now. Soon I’ll be able to grip tightly.

But I won’t.

Our church had a fun bounce house set up for the kids this past Sunday. Us parents chatted as we watched our kids leap and tumble about. Blue Eyes and I got into a conversation with a man who told us that he had five kids: four girls and one boy.

“What I didn’t know about girls,” he said, “is that they cry so much!” I assured him that it never really stops, and we smiled together. Then he pointed out some of his girls, one of whom was standing at the entrance to the bounce house — sobbing her little eyes out. Blue Eyes patted him on the shoulder and said, “Sainthood is just around the corner for you, mate!”

I loved this man’s response.

He said, “Not me. I’m just broken all the way through.”

I’ve thought about this broken-all-the-way-through concept ever since. I mean, really, what is a saint but someone who is broken all the way through? Saints are known for their humility, for their understanding that they are not the doer. At the same time, this brokenness, this submission, allows the light to shine — bright and unhindered — right through them.

Look at Mother Theresa. As the “saint of the gutter,” she often performed the lowest of tasks. She couldn’t have done that if she wasn’t broken all the way through. Yet she could be fierce when necessary. She was one tough lady on a mission from God.

The way I see it, God breaks us in order to use us more completely. That’s why Mother Theresa, while being completely humble, was a force to be reckoned with.

Here’s one of the great things about having an autistic child: it breaks us. Not just once either, as it would if some horrific event occurred and then was over. It’s a daily, hourly, sometimes moment-by-moment breakage.

Just for a moment, imagine you’re in your soul-body looking at what you’d like to learn in your coming lifetime. Maybe it’s major doses of humility, surrender, and openness. But how to accomplish such amazing gains in one short lifetime?

“I’ve got an idea!” your guide says. “How about you have a child who relentlessly challenges you and requires constant looking after. A child who may always be a child, no matter how old s/he gets. A child who doesn’t understand social norms and so embarrasses you in public many times over. Can you imagine how much that would teach you?”

“Yeah, baby!” your soul-self says. “That’s what I’m talking about! ” And into this life you leap.

As hard as it is having this very different kid, my soul self is content. The desperate clawing — the wishing, hoping and praying that the situation was otherwise — marinates slowly with the balm of acceptance and surrender. Daily I am more broken and, when I am in the God Zone, I feel my heart getting more peaceful because of it.

Hinduism has a trinity God-head: Brahma, Vishnu and Shiva. Brahma is the creator of all of life. Vishnu preserves it, and Shiva? Well, Shiva is the destroyer.

You may ask, what is a destroyer — a God of death and destruction — doing among the top three Gods? Lord Shiva, you see, destroys all that is false within us. He destroys particularly the ego, which includes delusions, desires and attachments.

The energy of destruction associated with Lord Shiva has great purifying power. Destruction opens the path for a new creation, a new opportunity for beauty and truth.

So hip hip hooray for our autistic children who, by breaking us all the way through, destroy our false desires and illusions.

May we remember, now and then at least, that Lord Shiva’s dance of death and destruction represents the most essential goodness. May we remember, now and then, that powerful things are happening within us because of our journeys.

Lastly, may we open and surrender to that power of good — so that, as saints in the making, it may flow through us ever more freely.

Blessings.

In our sleep, pain, which cannot forget,

falls drop by drop upon the heart,

until, in our own despair, against our will

comes wisdom through the awful grace of God.

— Aeschylus

I have a friend, Brooke, whose sister had cancer. The cancer spread steadily until it had filled her entire body. The pain was terrible to witness. For hours, sometimes, she would scream with the agony of it.

Finally one day, when Brooke couldn’t stand to watch the struggle any longer, she asked her sister, “Why don’t you just die?

Her sister looked at her and responded with a remarkable question. She asked, “How do you die?”

You see, she’d tried. She’d surrendered. She’d let go as best she could. She’d tried to leave her body. She’d prayed to be released. But she didn’t know how to die.

I can relate.

Not about the dying part, but about the truly surrendering and letting go part.

Sleep is, after all, like a little death. And, since the day we got Joseph’s diagnosis, sleep has been difficult for me.

It’s anxiety. When you have a child with ASD, anxiety gnaws at you with the consistency of a rat who has discovered a rotting corpse all to itself.

If you’ve practiced prayer and meditation or other techniques for staying centered and present, then daytime is relatively easy. But when you sleep — ah, then your defenses go down. That’s when anxiety can rear its ugly, poisonous, fang-toothed  head.

In the last week I have stopped running from it. Instead of popping a pill and leading myself through deep relaxation after the dream or the sudden awakening, I have chosen to use instead the light of awareness. I am journaling, asking, why did I wake up this time? What triggered it? What did I dream? Where did my mind go then? How am I feeling?

The findings: at least half the time, it’s a nightmare. Filled with anxiety, terror, and panic.

About Joseph.

In my last nightmare, I was so tired and zombielike that, when I passed by a couple of women and looked at them, my deadened eyes led to them having nightmares.

Wow.

My cousin, Lisa, who also has a son on the spectrum, tells me that there’s chronic anxiety and then there’s situational anxiety. But what if it’s a situation that’s chronic — like autism?

Chronic situational anxiety? asks Lisa.

Whatever its official title, I am amazed at how deep the anxiety goes, and it’s the same for every single other parent I know who has an ASD child.

I know what hasn’t helped: running from the anxiety. Popping a pill to cover it up without even trying to look at it.

Working with the light of awareness is proving to be an amazing thing. It’s like I’m stepping aside and allowing this spotlight to go where it will, to show me what it wants me to understand.

I am humbled to see that, just like every other mortal in this situation, I am so very worried, scared, and fearful.

I am also vulnerable, open, and absolutely sure that I don’t know all the answers.

It’s a mixed bag, just like the rest of life. What doesn’t kill you makes you stronger — but, in this case, strength isn’t about squaring your shoulders and pretending it doesn’t hurt. Strength is about looking into yourself with compassion and awareness. It’s about honoring your process — and it leads to empathy with the process, the journey, of every other human being on this planet.

For me, there is now a new willingness to be aware of the deepest, darkest anxieties. Where it will lead me, I don’t know.

But I am trusting the process. The light of awareness is indeed a light — and isn’t that an aspect of God, after all?

Will this new approach teach me how to let go and sleep again? For three nights in a row now I have closed my eyes to sleep and not opened them again until morning. It’s the first time in over three years that this has happened.

So I think maybe I’m on the right track.

I am also discovering that, when those formerly dark corners are flooded with light, they don’t look nearly as scary.